What’s in a test?

After talks last spring in New Jersey of making HIV testing mandatory for pregnant women, we find that the state has decided to move forward and enforce new legislation.
The law requires health care providers to make the test a part of routine prenatal care, with an “opt out” exception. However, newborns will also be required to be tested if the mother is HIV positive or her HIV status is unknown.
We had some really good discussion here around the issue, where commenter Sassygirl pointed out the ACLU’s position with some background information on mandatory testing for pregnant women and newborns, which explains that the testing of newborns is more or less senseless. It also features an example of a HIV-positive woman (from New Jersey, no less) whose child was taken away from her because she refused to give her newborn AZT treatment and was deemed an “unfit” mother. The baby ended up being HIV negative.
And while having the option to refuse testing is a good thing, studies show that many women who live in states that have mandates didn’t feel comfortable refusing testing, and almost one in five didn’t even know they were even tested for that matter. So how much of “an option” really is it?
It’s a complex issue and obviously prevention should be the priority, but do women’s private medical decisions need to be sacrificed in the process?

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103 Comments

  1. Posted December 27, 2007 at 6:16 pm | Permalink

    Testing a child at birth is inconclusive at best. No other health testing should be forced in anyone. It is really easy to treat a woman who is pregnant as being less than human, but she has the same right to refuse screening as anyone else.

  2. hopeisawakingdream
    Posted December 27, 2007 at 6:18 pm | Permalink

    “How does the testing itself prevent transmission exactly?”
    Testing mothers prevents their children from getting HIV by allowing the mother to be put on drugs that lower MTCT rates to about 3%. Without these drugs and the precautions such as c-sections and not breastfeeding, the transmission rate is anywhere from 25% to 50% of children born to HIV+ mothers will also contract the disease Because a baby is covered under federal funding the mother would receive AZT treatments.
    Because there is an opt-out clause, it is not completely mandatory. I do support the opt-out clause and think that should be part of every medical procedure. The testing would prevent children from being infected and that is great. Being on meds and using precautions drastically reduces mother to child transmission. Just like the HPV vaccine which prevents cervical cancer, I don’t know why you wouldn’t want these easy precautions modern medicine affords.
    Like Panda said, if we are concerned with slut-shaming, maybe we should be attacking the fact that it is much harder for adults to secure HIV funding than children. The resources are there, but they require a lot more information than just an HIV test. That is a much worse invasion of privacy if you ask me.
    In this case I don’t see the test as all that invasive compared with the potential benefit. Prevention and care are the motivation for the test, and you can refuse it so I guess I don’t see the big deal. If you can prevent something, why not?

  3. Posted December 27, 2007 at 6:34 pm | Permalink

    OK, I have read a lot more of the comments. Forbidden coma, the original post is about mandatory testing. Panda, no one is arguing that HIV testing for pregnant women isn’t a good idea, in fact, a great idea. Forced testing or refusing care to someone who refuses testing is the issue.
    I am also a medical student. I may not agree with many treatments or refusals of treatment, but I sure as hell don’t want state legislatures to decide which ones are allowed and which ones aren’t, especially when it comes to women, and doubly especially when it comes to pregnant women.
    While I am no fan of “slut shaming”, I would assume the most common way a pregnant woman would get HIV would be from a cheating partner. That is what we heard in our Department of Health mandatory HIV training. What is important is to offer and encourage testing to all women during pregnancy and allow her to practice informed consent, which is more sacred to me than HIPAA any day.
    Monkey – people die all the time by refusing screenings and treatment. Is it what I would want for my family member or for a future patient? No. Will I fight for their right to do so? Absolutely.

  4. ShelbyWoo
    Posted December 27, 2007 at 6:34 pm | Permalink

    I’d be happy if testing were the norm for all pregnant women in order to prevent transmission to the baby and the opt out were available (but discouraged and hopefully rarely used))
    And there is the problem: discouraged and hopefully rarely used Why do you think it’s ok to coerce someone into a medical test they don’t want? I am not HIV+, I know this. Why should I have to listen to a doctor lecture me on why I should get test I KNOW I don’t need? What happened to patient rights?
    I’m sorry, but I’ll take the CDC’s recommendation over yours. The test should be readily available and recommended to the patient. The patient should be given all the information needed to make the decision, but it should ultimately be voluntary (without badgering), not an opt-out clause. Let’s not forget that some patients will never even be informed that they have the opt-0ut alternative.
    Pregnant patients should be afforded the same rights as not pregnant patients.
    And, with that, I am “opting-outâ€? (probably more like “passing out”) as my cold medicine has worn off and the aches and pains are kicking in.

  5. SassyGirl
    Posted December 27, 2007 at 6:39 pm | Permalink

    Since it came up earlier, I am not for mandatory vaccines for anyone. My son was damaged by vaccines, so there is now way that I would want every girl to have to be vaccinated. Yes, there are ways to opt out, but most parents are not aware of that option, or it is difficult to claim exemptions in some states.
    I am not for any mandatory medical care. I don’t think that anyone should have any say with what happnes with my body.
    There have been cases of children being taken away from their parents because the parents choose an alternative model of medical care.
    Tell the women the risks involved without knowing your HIV status. Tell them what can be done to reduce their babies risks of contracting HIV. Tell them about what would happen if they tested positive and refused treatment. Tell them they have a choice and allow them to make it.

  6. A male
    Posted December 27, 2007 at 6:43 pm | Permalink

    “Last question, why in world should I be FORCED to pay for a test I do not need (I know I am not HIV+, why isn’t my word good enough)?”
    I do not consider you or any other poster, a liar. But there are patients who are not forthcoming with their medical histories. Some actually lie, and the health care provider is simply unaware. It’s a simple fact. There are also others who do not know their own health status, which is why tests such as these routine tests are required (and why health care providers practice “standard precautions” with all patients such as the wearing of gloves whenever there is possible exposure to bodily fluids and secretions – I remember when doctors, nurses and dentists did not wear gloves or eye protection). And the source of funding for HIV testing would be the same as for any other routine tests which patients may or may not agree to have. Insurance, out of pocket, public funds, or the hospital eats it.
    Some posters consider medical testing to be for liability, not health promoting purposes. Very well. What do you think would happen if an HIV positive woman, as is her right, opted out of being tested for HIV, gave birth to an HIV negative child, then passed HIV to the infant through breast milk? Why should the hospital be open to liability for the mother’s decision if someone gets the bright idea to sue the hospital for “allowing” the baby to get HIV? What would be the public reaction to a hospital “allowing” a baby to get HIV? It would be safest for the hospital not to allow the mother of unknown HIV status to breastfeed while in the hospital. If the mother is indeed HIV positive, it would also be safest for the baby.
    Once out of the hospital, if an HIV positive mother decides not to seek treatment, or does not practice better judgment with her own child or partners, that is indeed, and unfortunately, her affair. It is for the hospital to provide professional, nonjudgmental care for all who come through its doors, if mother or child ever return.
    As for men or male partners, I am all for routine, but optional testing, as it is for pregnant women.
    While indeed unfair that the mother is considered the “only” means of HIV transmission to her baby, how do posters forsee an HIV positive male with an HIV negative female partner passing HIV to that woman’s child? Is he sharing needles or directly exchanging bodily fluids with the child? Is that what fathers or HIV positive males are being suspected or accused of? No one is accusing or suspecting HIV positive mothers of this. It is a simple fact that an HIV positive mother, through NO fault of her own (the reason for her own HIV infection, of which there are a number of possibilities – needle sticks in health care providers – is quite irrelevant, thus it is not “slut shaming”), through the natural processes of childbirth, and breastfeeding, can unknowingly transmit HIV to her child.
    That said, it is still outrageous and inappropriate for CPS or any other authority to remove a child from a parent simply for refusing HIV screening, or simply for being HIV positive. HIV infection, while currently incurable, can be managed.

  7. A male
    Posted December 27, 2007 at 6:59 pm | Permalink

    Eric: “these routine tests are required”
    Sorry, I meant routine tests are offered or performed. They, as the prenatal screenings I have mentioned elsewhere, are not mandatory. I agree that health care providers need to better express the option to refuse.

  8. Mina
    Posted December 27, 2007 at 7:13 pm | Permalink

    “1. HIPAA is damn near useless and we both know it.”
    Indeed. Now that health care providers don’t do email anymore, many expect you to call during office hours instead. Do the people who passed HIPAA really think a hacker’s more likely to read your email than a boss or coworker is likely to hear you on the phone (now that phone booths are so rare so you can’t step out and use one)?
    “2.Why do you test? Is treatment free once you do? If not, what good does it do?”
    If you knew that you were HIV+ and that you couldn’t get treatment, would you still make an effort to not infect other people? Or would you not bother?
    “No one has yet to address how this is different from wanting all girls vaccinated for HPV.”
    One difference I’ve seen mentioned in another thread is that even if the mother isn’t tested, testing the newborn would reveal her HIV status (a HIV+ result means the mother’s HIV+ too) and thus violate her privacy. That argument reminds me of this case:
    http://news.bbc.co.uk/2/hi/africa/7117184.stm
    “…Tumaini Mbogela said her husband beat her when she returned from a voluntary counselling centre in the town of Makete where she took the HIV test…”
    If Ms. Mbogela tested HIV+ and there’s nobody she could have got HIV from but her husband, then by testing her the centre would have revealed her husband’s HIV status without his permission…
    “Mirm, testing allows HIV+ mothers to prevent transmission to their babies by
    “1) notifying them of their status
    “2) allowing doctors to take steps to prevent transmission–csection, etc.”
    It also allows HIV- mothers to know they’re at less risk, instead of leaving mothers and doctors wondering whether to do all the steps for every birth, just in case.
    “What do you think would happen if an HIV positive woman, as is her right, opted out of being tested for HIV, gave birth to an HIV negative child, then passed HIV to the infant through breast milk? Why should the hospital be open to liability for the mother’s decision if someone gets the bright idea to sue the hospital for ‘allowing’ the baby to get HIV?”
    In that sort of situation wouldn’t she and her family be more likely to argue that HIV doesn’t cause AIDS, and/or argue that whatever infected her and her baby are parts of their culture, than to sue the hospital?

  9. A male
    Posted December 27, 2007 at 7:49 pm | Permalink

    To posters such as mirm, Shelby Woo, DAS and others:
    You are certainly entitled to your views, and I hope people like you continue to speak out. Your concerns have merit. You are not paranoid. I hope your rights and choices are respected if and when you receive medical care. However, I hope no one, male or female, will be prevented from screenings offered to guide patient care (or to the cynical, to avoid liability) or improve public health. I also agree information without action (eg, affordable treatment for the HIV positive) is useless for *that* patient. However, HIV screening of mothers, with measures taken at childbirth, is an attempt to prevent HIV transmission to the *infant*. It is not necessarily meant to directly benefit the mother at all.
    “Why do the test, if there is no useful end result?”
    Precisely because the costs and complexity of HIV treatment are so great, reducing the number of people with HIV in the future, which is to say with current technology, saving their lives and protecting the health of their future partners and children, by identifying babies in need of HIV transmission *prevention* so they can be treated, sounds very useful. We can have one or two patients (mother/partner) now, or a handful more in the future. You are correct that HIV testing on a baby already born is of limited usefulness, and no guarantee that they will receive further treatment.

  10. A male
    Posted December 27, 2007 at 8:31 pm | Permalink

    Mina,
    at your #2, you bring up some interesting points. But again, those results are because of public prejudice against HIV and the HIV positive. The same “violation of privacy” occurs with nearly any disease that can be transmitted through intimate or sexual contact. My wife being found with chlamydia or genital warts would mean she most likely got it from me. Why should this be used in any argument to prevent testing? So my wife and I would both need treatment. I would thank her and the hospital staff for finding it rather than reacting in anger or shame.
    Eric: “What do you think would happen if an HIV positive woman, as is her right, opted out of being tested for HIV, gave birth to an HIV negative child, then passed HIV to the infant through breast milk? Why should the hospital be open to liability for the mother’s decision if someone gets the bright idea to sue the hospital for ‘allowing’ the baby to get HIV?”
    Mina: “In that sort of situation wouldn’t she and her family be more likely to argue that HIV doesn’t cause AIDS, and/or argue that whatever infected her and her baby are parts of their culture, than to sue the hospital?”
    I hope you are being facetious. Lawsuits are filed for so much less than “killing babies” by “allowing” them to get HIV from their mothers. It is no wonder so many OB/GYNs are getting out of the business, *limiting choices* for women and mothers.
    “Cars haven’t always been labor-and-delivery units in Virginia’s Northern Neck, an 85-mile strip of land on the Chesapeake Bay. Approximately 300 babies were born each year at Rappahannock General, and its two dedicated ob-gyns had been there for more than 20 years. But with the escalating costs of medical-malpractice insurance, obstetrics became such a financial drain that the ward was forced to close in 2004. Scenarios like this are playing out across the country as more and more ob-gyns and hospitals bail out of the birthing business. A survey by the American College of Obstetricians and Gynecologists (ACOG) found that one in seven ob-gyns has stopped delivering babies, and more than 20 percent have cut back on high-risk obstetrics.”
    http://www.parents.com/parents/story.jsp?storyid=/templatedata/parents/story/data/1166567779265.xml
    Hawaii is composed of islands. There was a time recently when the island of Molokai, which previously had five OB/GYNs, lost them ALL to the skyrocketing costs of malpractice insurance (GREATER than ANY possible income). How would any woman like to get on a plane or take a 90 min. interisland ferry ride just to have a checkup? How would you like to plan trips just to have a baby, and pray that everything occurs without incident and on schedule? Would you complain about the medical establishment and doctors if anything went wrong? Would you call it anti-woman? (I would) But it is not THEIR fault they can’t afford to be in practice.
    Health care providers are extremely liability averse, for good reason. When I was a nursing student, I was extremely sorry to see how facilities had to cover their asses because they were so afraid of being sued. For example, unless you were a direct witness or personally responsible, you cannot write “Patient fell to the floor” in a medical chart. That would be SUICIDAL, implying to any lawyer or jury that the hospital/professional did not have complete control over every aspect of the patient’s life and safety, not monitoring and protecting them 100% of the time while on the premises*. No, we were taught, if the time ever came, that we must write “Patient discovered on the floor.”
    [Lest anyone call this professional negligence, I invite anyone to explain how one nurse at a care home is supposed to monitor up to 20 to 36 patients (I have heard of 60:1 patient:nurse ratio in Honolulu) while also providing them all their medications or treatments on schedule? How about "just" six or seven demanding patients on an acute care ward? How about "just" two in ICU? Better yet, go to school, get your license, and show me how it is done. I want to learn.]
    * Note that it is precisely this control or lack of privacy in order to protect them, is what posters are objecting to.

  11. Mina
    Posted December 27, 2007 at 8:39 pm | Permalink

    “Mina: ‘In that sort of situation wouldn’t she and her family be more likely to argue that HIV doesn’t cause AIDS, and/or argue that whatever infected her and her baby are parts of their culture, than to sue the hospital?’
    “I hope you are being facetious. Lawsuits are filed for so much less than “killing babies” by “allowing” them to get HIV from their mothers. It is no wonder so many OB/GYNs are getting out of the business, *limiting choices* for women and mothers.”
    True, that does happen a lot. It’s just that I heard people caring more about preserving customs than about preventing AIDS happens a lot too.

  12. spaceninjamonkey
    Posted December 27, 2007 at 9:01 pm | Permalink

    According to the RH Reality Check report, opt-out-mandatory is only tantamount to actual mandatory testing when the consent isn’t written. The specifics of the law should include a requirement for written consent.
    Also, the test should be conducted as close as possible to the delivery date, since not all women carry their babies to birth.
    With those clauses, saying mandatory testing is flawed would be tantamount to saying that a mother has the right to increase the odds that her child will contract HIV during delivery.
    This is what the article says:
    In Arkansas, which also has an opt-out testing program that doesn’t require written consent, a study found that “16% of women tested did not even know that they had been tested for HIV.” Without written consent, “…what they’re calling ‘routine testing’ will, in practice, be ‘mandatory testing,” Rose Saxe says.

  13. A male
    Posted December 27, 2007 at 9:12 pm | Permalink

    “It’s just that I heard people caring more about preserving customs than about preventing AIDS happens a lot too.”
    I would welcome any client/patients with views like those of posters to this site. I would treat them as I would any other person who comes through the door. I would, however, also like them to sign releases from liability whenever exercising their right to make their own health decisions, so I or my employer will not go bankrupt for client/patient choices. I would also be grateful if client/patients did not badmouth or sue professionals and their employers when things go wrong, if the unfavorable outcome results from client/patient choices, such as breastfeeding with HIV against medical advice, or against hospital policy. HIV transmission to infants can only be effectively prevented if we know ahead of time that the mother is HIV positive, and the proper measures taken. The client/patient’s word is not enough to gamble another life on. We would need to test the mother at some point to know how to proceed. That is, if it is the mother’s intent to have a baby without HIV.

  14. A male
    Posted December 27, 2007 at 9:26 pm | Permalink

    “Also, the test should be conducted as close as possible to the delivery date, since not all women carry their babies to birth.”
    “Without written consent, ‘…what they’re calling ‘routine testing’ will, in practice, be ‘mandatory testing,’ Rose Saxe says.”
    Good points, SNM. That is one more way to reduce unnecessary testing and costs. Request for consent for each proposed test should also be written and initialed or signed, to inform client/patients, and for legal purposes. Authorization for routine newborn immunization and testing is that way at facilities in my community.
    Informed consent is respectful of client/patient rights, and people should not be “surprised” by unauthorized tests, procedures or fees.

  15. kissedadrunkgrlx
    Posted December 27, 2007 at 10:41 pm | Permalink

    just to throw my own $.02 in about how easy it is to obtain medical infomation about other people.
    when i was 16 i volunteered at a womens clinic that provided sti testing, pap smears, HBC, pregnancy tests, and counceling about one’s options if one turns out to be pregnant.
    anyways. i was 16. on my first day, i signed a piece of paper saying i wasnt allowed to talk about anyone medical informations, then i was told i was allowed (almost encouraged) to read any random files when i wanted, in order to learn. nothing was held back from me. and let me tell you, i learned a lot. i can read a medical file like nobodys buiness.
    one day i was sifting through files and i stumbled upon a file belonging to a girl in my school, who happened to have a rep as a huge slut and drug addict. i felt guilty reading it, but i couldnt resist. i mean, i wasnt breaking any clinic rules…

  16. spaceninjamonkey
    Posted December 27, 2007 at 10:48 pm | Permalink

    Yeah, and if you had told anyone about it, you would have been prosecuted.
    Anyone who gets HIV testing could have their records looked at by a clinic employee.
    That’s not a good reason not to get tested, imho.

  17. A male
    Posted December 28, 2007 at 12:04 am | Permalink

    There is a lot of justifiable concern about privacy, and mistrust in enforcement of HIPAA.
    I would like to add my observation that it is indeed simple to obtain (non-electronic) information on the sly, by appearing to be someone who belongs in a hospital. I will not elaborate.
    This concern for privacy is just one more reason the largest local facility is switching to a paperless system. People who do not know employee logins and passwords will not have access to client/patient information. It will probably be as safe as personal e-mail or information in a large company database. Not perfect, but better than reams of paper and files lying around behind the counter with hardly anyone to watch them because they are too busy working.
    As a student, I too was allowed access to patient information to study. Luckily for those patients HIPAA is enforced in my community. I was not allowed access to any patient information unless I was responsible for that very patient. If I wanted to retrieve information later (after transfer or discharge), I needed to go through the department of patient records where authorization was required to request specific information. We were not allowed to simply go through charts or computer terminals at random.
    That poster may not have been breaking “clinic rules” but that clinic is not following HIPAA, if just anyone including omg – volunteers, can go looking through confidential information at will.
    Agreed, not a compelling reason not to get tested.

  18. A male
    Posted December 28, 2007 at 12:53 am | Permalink

    Not a hijack but an aside about alternative health practices:
    As nurses, we were taught to respect client/patients’ health care wishes, which may be to do whatever the doctor says, or to reject treatment altogether (unless of course, one has tuberculosis). If it is in the patient’s best interest (mental health is also important), they should be allowed to practice their cultural or alternative health practices. This may include prayer, laying on of hands, Hawaiian chanting, belly wraps to aid in postpartum recovery, etc. Many “alternative” health practices such as massage are empirically beneficial and effective.
    Quite frankly, some of what I see and hear is pretty out there, and would not pass the test for a licensed health facility to perform themselves. For example, one young instructor told us (without any identifying information) about some parents who approached her with concern that their sickly child’s condition was not improving. The nurse went into the room to check on the child, and observed a number of jars scattered around the room. [I already knew what was coming.]
    Yes, it turns out that the family practiced urine therapy, and those jars of liquid were urine being saved for the child to drink each day. The nurses were able to convince the family that the child should have the usual treatment in addition to periodic urine therapy.
    I do not know how that one made it by the doctors or CPS.

  19. Life in America is becoming surreal
    Posted December 28, 2007 at 1:03 am | Permalink

    It perplexes me reading some of the posts here and realizing that people are more concerned for themselves than they are for their unborn child. If a test was available to me during any one of my 4 pregnancies that would tell me that I had some disease that would be passed onto my child unless special procedures may help to prevent that.. why would I not want to take it? I would do anything to ensure I can produce a healthy child even at the risk of exposing myself at any time. I would never put myself before my children. As feminists are we taking this too far? Having the right to pass on sexually transmitted diseases to our children which could potentially kill them? In regards to another post up top, many woman have obtained sexually transmitted diseases from their partners where they thought they were 100% faithful. I think its naive. If I were a medical professional, I would not feel I would be doing my job if I didnt administer the test to provide the best healthcare available and preventing the disease to continue unessessarily.

  20. A male
    Posted December 28, 2007 at 1:27 am | Permalink

    Life in America
    I admit, I slipped and posted “That is, if it is the mother’s intent to have a baby without HIV” at the end of one of my posts, myself. I also got snarky about preventing lawsuits. That was unprofessional and I apologize.
    I like babies. I want people to have healthy babies. But as you may have read, the alternative to not respecting patient choice, is possibly having them not come in at all because they do not feel respected as women, adults, or human beings. This would have terrible repercussions for public health. Making recommendations in the interest of client/patient well-being, and allowing them to make their own informed choices is the best compromise we have without becoming a fascist state.
    I am horrified by the notion that someone can take babies away from mothers and families, just because of HIV status. I have never seen it in practice, but do not know how not allowing a baby to be breastfed by a mother of positive or unknown HIV status would be enforced. Does the staff take the baby away for safekeeping between feedings? Do nurses stand guard while the mother bottle feeds the baby? My guess would be the nurse would bring mother and baby formula at regular intervals, and the mother would be free to dump it in the trash and breastfeed the baby if she wants. In privacy.

  21. fatsweatybetty
    Posted December 28, 2007 at 4:20 am | Permalink

    I think that the vast majority of mothers would take precautions to ensure that their children are born as healthy as possible. However, I am concerned that mandatory testing for HIV could only be the beginning of stomping on patients’ rights, women’s in particular. Yes, we would like to prevent children being born with HIV. I’m sure that many people would also like to prevent children being born with other diseases and birth defects. Where would that lead?

  22. A male
    Posted December 28, 2007 at 5:13 am | Permalink

    FSB: “Where would that lead?”
    I believe that insurers and elected officials wanting to reduce health care expenditures, will promote or enact an ever increasing number of involuntary means to “improve public health” at the expense of individual freedoms. For examples, funding only “Abstinence Only” education to “prevent” spread of HIV, and prohibiting smoking, even in public outdoor areas and private places of business. Who knows where government regulation will end? It may lead to a form of health fascism, a society where people such as smokers or the obese will be discriminated against for their “unhealthy” lifestyles and “choices,” while the healthy and “beautiful” such as thin women with cosmetic surgery and makeup, will be idolized and emulated to an unhealthy degree.
    . . . Oh, you mean it’s happening already?
    An increasing desire to have only “healthy” babies, or to select babies for desirable qualities such as male gender, increased height or intelligence, etc., will lead to “shopping for babies” – trading in desirable eggs and sperm, using IVF and discarding unnecessary or undesirable fertilized eggs, embryos and fetuses; and aborting or giving up for adoption babies with “undesirable” qualities such as female gender or genetic factors for Down Syndrome. [Just examples. Of course there is nothing wrong with a baby girl or someone with Down Syndrome.]
    To some degree, it already happens today in the US. Increased understanding of DNA will allow selection for other genetically influenced conditions such as obesity and forms of cancer. I have never watched the movie, but have been told the future could be like “Gattaca.” Unrestricted expression of reproductive freedoms could lead to outright eugenics, and determining who would be considered worthy or desirable to be born or to breed. We have seen this numerous times before in the last two centuries, haven’t we? It could be starting again, driven this time not by fascist dictators, but the common people themselves.
    I forget which support group it was, and whether it was in Japan or the US. Let us pretend for the sake of argument it was the Down Syndrome support group. They were in the news recently to protest against routine prenatal screening (which may lead to abortion for genetic selection) because they argued babies with their condition had a right to be born.
    Conditions like Down Syndrome are not like smallpox. To reduce or eliminate cases of genetic conditions currently means to not allow people with these conditions to be born at all.
    I am concerned by recent trends seen and debated in the medical community, particularly “shopping for babies,” but still support reproductive freedoms.

  23. A male
    Posted December 28, 2007 at 5:34 am | Permalink

    Sorry, “shopping for babies” for genetic traits is properly called “genetic selection (or manipulation)”
    Also, I meant to say in short, that an increasing number of *parents* (plural – I am not blaming women or feminists) are behaving like consumers, and behaving as if (because they are not) babies are commodities. That is the future.
    Recent trends and debates on ethics can be seen online with a google search for terms such as “genetic selection.”

  24. Mina
    Posted December 28, 2007 at 6:44 am | Permalink

    “An increasing desire to have only ‘healthy’ babies, or to select babies for desirable qualities such as male gender, increased height or intelligence, etc., ”
    Add this to the list:
    http://www.slate.com/id/2149854/
    “Several U.S. fertility clinics admit they’ve helped couples deliberately select defective embryos. According to a new survey report, ‘Some prospective parents have sought [preimplantation genetic diagnosis] to select an embryo for the presence of a particular disease or disability, such as deafness, in order that the child would share that characteristic with the parents. Three percent of IVF-PGD clinics report having provided PGD to couples who seek to use PGD in this manner.’ Since 1) the United States has more than 400 fertility clinics, 2) more than two-thirds that answered the survey offer PGD, and 3) some clinics that have done it may not have admitted it, the best guess is that at least eight U.S. clinics have done it. Old fear: designer babies. New fear: deformer babies.”
    Of course, I bet that these couples consider the embryos they didn’t implant the “defective” ones.
    “Unrestricted expression of reproductive freedoms could lead to outright eugenics, and determining who would be considered worthy or desirable to be born or to breed.”
    That already happens every time someone thinks “do I want to have a child with this person?” before deciding whether or not to have unprotected sex with someone else.
    “We have seen this numerous times before in the last two centuries, haven’t we? It could be starting again, driven this time not by fascist dictators, but the common people themselves.”
    Hold on a second. The problem with eugenics is oppression of existing people including suppression of their reproductive freedoms.
    You’re not lumping together murders, forced sterilizations, and forced breeding with my father choosing to only have babies with his wife (which did end up reducing the racial diversity of his contribution to the population) and my choosing to not get pregnant (which does end up slowing the population growth of my demographic groups), are you?
    “Conditions like Down Syndrome are not like smallpox. To reduce or eliminate cases of genetic conditions currently means to not allow people with these conditions to be born at all.”
    It also means allowing people who already have those conditions, or at least carry those genes, to use birth control.
    For example, think of all the babies who were never born because of girls with Down Syndrome staying virgins for some time after menarche instead of being raped and impregnated ASAP…

  25. A male
    Posted December 28, 2007 at 7:35 am | Permalink

    Mina: “You’re not lumping together murders, forced sterilizations, and forced breeding with my father choosing to only have babies with his wife (which did end up reducing the racial diversity of his contribution to the population) and my choosing to not get pregnant (which does end up slowing the population growth of my demographic groups), are you?”
    I know what you mean by murder, and abortion is not murder, but mothers/parents selecting babies which do not have known defects or for those with conditions similar to that of the parents, is what it is – selecting for what one believes will be a more desirable (usually “healthy”) baby *. Yes, the popular term is “designer babies.” My wife’s choice was to make a natural roll of the dice. After my own diagnoses just this year, we now realize that meant my children had a very good chance, I mean 50% or greater, of inheriting my psychiatric condition(s) such as (allegedly) ADHD. I see the signs and symptoms in them already. In addition, my son, at least, has my body type (very underdeveloped by US standards for age) and cosmetic defects. Raising them and caring for myself will probably be a lifelong challenge.
    Forced contraception or sterilization is usually reserved for sex offenders (eg male chemical castration in an effort to control behavior) or those deemed “unfit” mothers (implants or Depo Provera shots).
    I do not foresee forced breeding, but genetic selection or manipulation does or will allow parents to behave like consumers when trying to have a child with desirable traits. It is not a random selection, as when a man chooses an attractive partner or vice versa. We can look for specific genes and select embryos today. In the future, we may manipulate genes directly. Fortunately, we still do not know the genetic source of intelligence. People are also free to shop for eggs or sperm from donors with desirable qualities such as looks.
    “Yet positive eugenics persists, reborn again in a less goofy and probably more important form than ever. For Graham and for eugenicists in the ’20s, the goal was public health and national survival. The goal of today’s eugenics is consumer choice. We are entering an age of private positive eugenics. Soon scientists will be able to manipulate embryonic genes—perhaps eliminating diseases, increasing resistance to illness, even augmenting intelligence. It will be done by apolitical doctors, not conservative millionaires, and it will be done for the good of individual patients, not the for the good of society.”
    http://www.slate.com/id/102374/
    Voluntary use of birth control or choosing not to have children is more random. I will dare to say that parents tend to have children like themselves, however. For example, affluent, well educated families have an improved chance of producing same, mostly through economic factors. I choose not to elaborate any further. but will say I do not believe in any class of “undesirable” humans.
    * All up to individual choice, of course.

  26. A male
    Posted December 28, 2007 at 7:52 am | Permalink

    Mina: From “The Rise of the Smart Sperm Shopper”
    http://www.slate.com/id/104633/
    “Cryobanks became ever more sensitive to consumer anxiety about health and donor achievement. Today the California Cryobank—probably the world’s premier sperm bank—tests for a dozen genetic disorders and for almost as many infectious diseases. Donors must complete a 38-page, three-generation medical history, and submit to months of blood testing. The cryobank accepts only college graduates or students enrolled in a four-year program. (The cryobank’s offices are in Westwood, Palo Alto, and Cambridge, Mass., meaning that most of its donors hail from USC, UCLA, Stanford, Harvard, and MIT.) And donors must stand at least 5 feet 9 inches tall. By the time it weeds out the sickly, the short, and the dim, the California Cryobank accepts only 3 percent to 5 percent of applicants.”
    - Goodness, the “world’s premier sperm bank” is rather selective, are they not? Positive eugenics, indeed. All subject to “consumer choice” of course.
    “The cryobank barrages customers with choices. A recent catalog listed more than 170 men of every race, national origin, and appearance. A client can buy the entire long medical history (written in the donor’s own hand, so the client can judge handwriting). Some donors make audiotapes that clients listen to.”
    - Judging donor father fitness by *handwriting* and voice? I never imagined it went that far. News flash: improve your child’s handwriting through study and practice of good penmanship, a fairly lost art today.

  27. lilorphant
    Posted December 28, 2007 at 9:47 am | Permalink

    A lot of this is moot, I have four children born in three states, all ob’s took several vials of blood, to test for various things, including iron levels, chlamidia, blood type, and so on. These are the same vials used to test for HIV, not an extra vial, and the same blood is used to test for protein levels to determine possible birth defects, the tests are pretty much run as a matter of course to plan a course of action for the rest of your pregnancy. Once the tests are back, the OB can than decide what sort of treatment to provide. Most OB’s will require it as policy, they don’t want to go blind into a pregnancy without knowing they could have prevented HIV transmission.
    I suspect that the policy has been tracked to a decrease in HIV transmission from mother to child, so it would make sense that a proven method would be handed up to state legislatures.
    I think it is draconian to require by law any test, however it makes good sense on the part of the ob to test everyone.

  28. SassyGirl
    Posted December 28, 2007 at 9:55 am | Permalink

    It isn’t about not caring about your baby, it is about wanting to protect your rights and the rights of your baby.
    http://www.mothering.com/articles/new_baby/breastfeeding/azt-roulette.html
    http://www.mothering.com/articles/new_baby/breastfeeding/hiv-underground.html

  29. spaceninjamonkey
    Posted December 28, 2007 at 2:21 pm | Permalink

    Sassy Girl
    AZT is not the only way to lower the odds of HIV transmission. C-sections are also an option.
    Also, what the NEW JERSEY law is talking about is routine testing, it’s not strictly mandatory since there is an opt-out clause. The only thing that needs to be clarified is that the opt-out clause should include written permission/denial.
    When did all these cases take place? I don’t see a lot of dates.
    Again, we are talking about ROUTINE testing which the CDC advocates, the label of mandatory is not accurate in NJ.

  30. SassyGirl
    Posted December 28, 2007 at 3:35 pm | Permalink

    Spaceninjamonkey,
    C-sections, while becoming fairly routine, are still surgery and still have risks. What would happen to the woman who tested positive (even though the incidence of false positives are fairly common) and she refuses surgery?
    BUT, the opt out option will probably not be disclosed. Just like mandatory vaccination laws, many parents think that their children have to be vaccinated or they won’t be able to go to school, they don’t know that they can file an exemption. This will probably be the case with the HIV testing. The doctor will probably tell the woman that it is mandatory that she is tested and she will not know that she can say no.
    OR, if she refuses, will she be deemed an unfit parent? What will happen if she is tested and decides that she is not going to do AZT and refuses a c-section? What if she wants to breastfeed? Studies have shown that babies with HIV positive mothers who are breastfed have the same rates of HIV as those who aren’t. There are others who feel that it is risky, will these women lose their babies?
    I still think that it should be offered to every woman, and man for that matter, but should be “offered” nonetheless.
    Women are not stupid. We are able to make our own decisions. We should be given the facts from BOTH sides and be allowed to make an informed decision, and if a woman decides to not be tested, that decision should be respected.

  31. SassyGirl
    Posted December 28, 2007 at 3:35 pm | Permalink

    Spaceninjamonkey,
    C-sections, while becoming fairly routine, are still surgery and still have risks. What would happen to the woman who tested positive (even though the incidence of false positives are fairly common) and she refuses surgery?
    BUT, the opt out option will probably not be disclosed. Just like mandatory vaccination laws, many parents think that their children have to be vaccinated or they won’t be able to go to school, they don’t know that they can file an exemption. This will probably be the case with the HIV testing. The doctor will probably tell the woman that it is mandatory that she is tested and she will not know that she can say no.
    OR, if she refuses, will she be deemed an unfit parent? What will happen if she is tested and decides that she is not going to do AZT and refuses a c-section? What if she wants to breastfeed? Studies have shown that babies with HIV positive mothers who are breastfed have the same rates of HIV as those who aren’t. There are others who feel that it is risky, will these women lose their babies?
    I still think that it should be offered to every woman, and man for that matter, but should be “offered” nonetheless.
    Women are not stupid. We are able to make our own decisions. We should be given the facts from BOTH sides and be allowed to make an informed decision, and if a woman decides to not be tested, that decision should be respected.

  32. A male
    Posted December 28, 2007 at 5:47 pm | Permalink

    “it’s not strictly mandatory since there is an opt-out clause”
    Until this is clear to all individual women, and publicly known, the effects will be the same. I have seen tests and procedures verbally “recommended” and “highly recommended” by medical staff, without explicitly adding that refusal is an option or informing them of possible complications. Also, verbal recommendation instead of actually encouraging and doctors *waiting* for women to sign the more detailed forms, is an unfortunate reality. Actual informed consent needs to be practiced, according to policy and law.
    As a nursing student, I encouraged women in OB to ask questions, going so far as to elaborate or expand on questions to the doctor, if I felt the women were apprehensive or vague. One role of the nurse is patient advocate. We are not there to “help” doctors. We are there to help *patients* and see their rights are respected. [Which is why nursing abuses are so tragic and inexcusable.]

  33. A male
    Posted December 28, 2007 at 5:53 pm | Permalink

    Correction: Also, verbal recommendation instead of actually encouraging women to read and comprehend the required forms before signing, while the doctor waits, is an unfortunate reality.
    Doctors can be an impatient and intimidating bunch. Even I don’t like them watching over or waiting for me. Some individuals are actually well-known for being dicks to nurses and patients.

  34. Mina
    Posted December 28, 2007 at 6:35 pm | Permalink

    “I know what you mean by murder, ”
    Yeah, I was thinking of how fascist dictators implemented eugenics. Likewise when I mentioned forced sterilization.
    “I do not foresee forced breeding”
    I wasn’t forseeing that either, I was remembering reading about it:
    http://www.crimesofwar.org/thebook/sexual-violence.html
    “…Mirsada was released only when she became visibly pregnant, and her jailer-rapists said, ‘Go bear our Serbian children.’ By the time she crossed the front and found medical care in Croatia, the fetus was too developed to be safely aborted…”
    “It is not a random selection, as when a man chooses an attractive partner or vice versa.”
    Choosing *one* partner is still considerably less random than some of the other possibilities…
    “Mina: From ‘The Rise of the Smart Sperm Shopper’
    “http://www.slate.com/id/104633/
    “‘Cryobanks became ever more sensitive to consumer anxiety about health and donor achievement. Today the California Cryobank—probably the world’s premier sperm bank—tests for a dozen genetic disorders and for almost as many infectious diseases. Donors must complete a 38-page, three-generation medical history, and submit to months of blood testing. The cryobank accepts only college graduates or students enrolled in a four-year program. (The cryobank’s offices are in Westwood, Palo Alto, and Cambridge, Mass., meaning that most of its donors hail from USC, UCLA, Stanford, Harvard, and MIT.) And donors must stand at least 5 feet 9 inches tall. By the time it weeds out the sickly, the short, and the dim, the California Cryobank accepts only 3 percent to 5 percent of applicants.’
    “- Goodness, the ‘world’s premier sperm bank’ is rather selective, are they not? Positive eugenics, indeed. All subject to ‘consumer choice’ of course.”
    That still sounds less selective than many women are when choosing which men to have children with via unprotected sex.
    For example: Suppose a 5’8″ MIT alumna who carries the sickle-cell anemia gene only wants to get pregnant with her 5’10″ grad school sweetheart who would find that he meets the sperm bank’s standards if he applied?
    Must she instead bear the children of a diverse range of men (including at least one man shorter than her, one man less educated than her, one man carrying the sickle cell anemia gene, etc.) in order to not be guilty of eugenics? After all, limiting her pregnancies to her lover’s sperm would reduce her children’s genetic diversity even more than limiting them to the sperm bank’s men’s sperm would…

  35. Mina
    Posted December 28, 2007 at 6:47 pm | Permalink

    “Doctors can be an impatient and intimidating bunch. Even I don’t like them watching over or waiting for me. Some individuals are actually well-known for being dicks to nurses and patients.”
    WTF? Shame on them.
    Maybe I’m just fortunate, but usually the nurse sees me first then I’m waiting for the doctor instead of the doctor seeing me first and lurking over the nurse.
    This setup seems to let my appointment begin before the doctor’s previous patient’s appointment ends (if the doctor’s running late). Doctors should be *grateful* for nurses making it possible.

  36. A male
    Posted December 28, 2007 at 7:12 pm | Permalink

    Eric: “I do not foresee forced breeding”
    Mina: “I wasn’t forseeing that either, I was remembering reading about it:”
    http://www.crimesofwar.org/thebook/sexual-violence.html
    Ok. But I thought we were talking about a practice of positive eugenics, such as parents freely choosing to raise a future generation of “healthy” children, not war crimes to increase numbers of my own ethnicity. I rather enjoy the government public handwringing over the rapid decline in the Japanese population, BTW.
    “Must she instead bear the children of a diverse range of men (including at least one man shorter than her, one man less educated than her, one man carrying the sickle cell anemia gene, etc.) in order to not be guilty of eugenics?”
    People are “guilty” of nothing, and I demand nothing. It is practicing reproductive freedom. However, consciously or unconsciously limiting one’s choices in desirable qualities in one’s mates (or children) based on race, height, looks, athletic ability, intelligence, academic background, or socioeconomic class, while rejecting others, is what it is. It will not go away until people expand their range of choices.
    [I, for one, look forward to the day, reportedly mid-21st century, when "minorities" and people of mixed ethnicity outnumber caucasians. Not because I hate caucasians, but because I prefer diversity. I love being in Hawaii, where 67% of people are "minorities," many of them foreign born. I will enjoy seeing the reaction of people like David Duke, however. I see from his website that he's worried enough already.]
    “After all, limiting her pregnancies to her lover’s sperm would reduce her children’s genetic diversity even more than limiting them to the sperm bank’s men’s sperm would…”
    Why would that mean reducing genetic diversity?

  37. Mina
    Posted December 28, 2007 at 7:24 pm | Permalink

    “Ok. But I thought we were talking about a practice of positive eugenics, such as parents freely choosing to raise a future generation of ‘healthy’ children, not war crimes to increase numbers of my own ethnicity.”
    In my original mention of forced breeding, and my later clarification of it, I was thinking more of the “driven this time not by fascist dictators, but the common people themselves” statement.
    “However, consciously or unconsciously limiting one’s choices in desirable qualities in one’s mates (or children) based on race, height, looks, athletic ability, intelligence, academic background, or socioeconomic class, while rejecting others, is what it is.”
    Exactly. That is what it is no matter if the two’s egg and sperm meet via IVF or via sex.
    “‘After all, limiting her pregnancies to her lover’s sperm would reduce her children’s genetic diversity even more than limiting them to the sperm bank’s men’s sperm would…’”
    “Why would that mean reducing genetic diversity?
    For example, having two babies with the same lover’s sperm would be less genetically diverse than having two babies with the sperm bank donations of two men who aren’t identical twins.

  38. A male
    Posted December 28, 2007 at 7:39 pm | Permalink

    Eric: “Some [doctors] are actually well-known for being dicks to nurses and patients.”
    Mina: “WTF? Shame on them.”
    Did I read that you are a medical student? You are fortunate not to experience much of this. I see many readers have problems with their OB/GYNs, for example. Ours are reportedly all fine.
    Well, some doctors, all male and tending toward middle aged in that limited sample population, believe their skills and experience make them special. My nursing instructors made their sentiments quite plain with sayings such as:
    “Nurses run the hospital. Doctors are just guests.*”
    “Doctors are not God.”
    * In acute care, a given doctor may make morning and afternoon rounds on weekdays, a few minutes each day, if they can take themselves away from their practice or surgery. (I considered it a favor if doctors came in after hours or on days off in their street clothes, to check on their patients.) Nurses, naturally, are always there. In long term care, healthy residents see their doctors *once a year*. It is no surprise that locally, directors or managers of facilities are probably nurses. And women.
    “Doctors should be *grateful* for nurses making it possible.”
    I respect doctors. In return, doctors should realize that nurses are their eyes, ears, and hands, and when authorized, act or speak on their behalf.

  39. Mina
    Posted December 28, 2007 at 7:50 pm | Permalink

    “Did I read that you are a medical student?”
    Not me, I’m just a patient at times. OTOH, I live in Boston. Maybe the competition among health care providers and options weeds out more of the bad doctors here?
    “I respect doctors. In return, doctors should realize that nurses are their eyes, ears, and hands, and when authorized, act or speak on their behalf.”
    And patients should respect nurses for that too!

  40. A male
    Posted December 28, 2007 at 7:57 pm | Permalink

    Eric: “Why would that mean reducing genetic diversity?”
    Mina: “For example, having two babies with the same lover’s sperm would be less genetically diverse than having two babies with the sperm bank donations of two men who aren’t identical twins.”
    There is also the possibility of using the same sperm donor, or “trading up” for subsequent children. The so-called “Nobel Sperm Bank” was noted for having popular requests. For example, sperm donor code name “White,” while unable to have children of his own, fathered at least 13 others with different women, according to Slate. His legacy lives on. Egg and sperm donations expand the lines of people who never would have had that many children to begin with (A handful. Tens? Hundreds?), while substituting their own DNA for that of the legal parents. [One reason Japan does not legalize sperm/egg donations is because they fear a future where anonymous half-siblings or parents and children encounter by chance and have sex or reproduce. Hysteria, but it is interesting that the US does not share such concerns.]

  41. abra
    Posted December 28, 2007 at 8:32 pm | Permalink

    Amale: “I would, however, also like them to sign releases from liability whenever exercising their right to make their own health decisions…”
    Woah, Nellie! Patients should always be making their own health choices. Women are adults. Adults get to decide whether they are going to undergo tests, surgery, medical therapy, etc.
    In fact, it ought to be the other way around. When patients decide to let physicians make decisions FOR them, both the patient and the physician should have to sign something. imho it should include a garuantee (“If this bladder repair surgery is unsuccessfuly, just come back within 6 months for a free do-over”) and the physician’s acceptance of any adverse consequences resulting from medical mistakes. How ya like them apples?

  42. abra
    Posted December 28, 2007 at 8:49 pm | Permalink

    Sassygirl, I’m totally on the same page with you about the health choices of pregnant mothers. As a homebirther, I’ve encountered much of the fascism that passes as “concern for babies” — as if health care professionals could possibly care more about my babies than I do??
    I have a great OB who is supportive, but his office staff is not. They routinely try to pressure me into tests that I do not want or need, which only cost me money. Last pregnancy I was taking off my clothes to give them a GBS test I didn’t want or need, knowing that even if it was positive I was not going to be on IV antibiotics during the labor because I would be at home. Why was I going to do it? Because some nurse had nearly convinced me to do it FOR THEM, so THEY wouldn’t get ‘in trouble’ or whatever. LOL Fortunately my husband was there to remind me that I was at the OB’s office for my needs, not THEIRS.
    Women are routinely bullied into all kinds of medical decisions. My daughter, for example, who pushed into a c-section with the phrase, “We can either do a c-section now, or wait until your baby goes into distress and then do it.” Her baby was perfectly fine, all vitals great, and there was no indication that he was about to go into distress. She had simply been occupying the LDR room for too long and they were ready to move on to the next patient. Their words made her feel like she would be a bad mommy if she didn’t lay down where they could cut her open.
    Millions of women experience this kind of subtle bullying. Other times it’s more overt — like the cancer patient who was put into a medical coma so they could railroad through court a decision to deny her chemotherapy and instead deliver her baby by c-section — an action they knew would kill her. She and her baby both died, since the baby was too premature to survive (which they also knew.)
    In more recent cases, women have been arrested or threatened with arrest for refusing inductions or c-sections. Hospitals can also refuse to release your baby if you don’t comply with their bullying.

  43. SassyGirl
    Posted December 28, 2007 at 11:33 pm | Permalink

    I am also a homebirther. I had my first son in the hospital and I could not handle the bullying and lack of choices. My second was born at home and it was wonderful.

  44. A male
    Posted December 29, 2007 at 5:03 am | Permalink

    abra abra
    Welcome. I don’t believe we’ve ever met. I haven’t been able to change my sign in and make it work yet, but my name is Eric.
    Thank you for your response. It pleases me that people think the opinion of a man is worth reading.
    abra abra: “When patients decide to let physicians make decisions FOR them, both the patient and the physician should have to sign something. imho it should include a garuantee (“If this bladder repair surgery is unsuccessfuly, just come back within 6 months for a free do-over”) and the physician’s acceptance of any adverse consequences resulting from medical mistakes. How ya like them apples?”
    You and every other poster who are upset about being denied choices at their doctor, or being treated with disrespect are absolutely correct in that regard, and I’ll tell you why. Bear with me.
    Firstly, that was one of my posts where I got snarky. I have apologized for being unprofessional, if you didn’t catch that earlier, and I apologize to you now for touching a nerve.
    I am very sorry to read of your experience at the hospital. A number of posters have had serious complaints about their OB/GYN, including actually being sexually violated, through no fault of their own. Their treatment is appalling and inexcusable. I encourage anyone to take their concerns or complaints through the proper channels, as high as necessary, to make yourself heard. Report it to the authorities or file a lawsuit, if necessary. If that is what it takes to wake them up to their problem and take measures to address them, so be it. [Just because I complain about lawsuits does not mean I believe they are without merit.] I am also sorry that this step is people’s own responsibility, because the offender probably does not know or does not care about your poor treatment or complaint, to change on their own.
    [In the largest facility in my community, there is a new nurse manager position. This woman, a talented nurse supervisor to begin with (Jamaican - awesome), does not practice nursing anymore. Her full time job is to maintain quality control and client/patient satisfaction. She handles all complaints, large or small. As a student, I have watched her respond to complaints personally, apologizing to client/patients, and doing what she could to address their situation. I have seen her then instruct staff (gathered all of them, not just the offender) on how to provide better customer service. That's right. I said, customer service. For example, no matter how hectic things get, there is no excuse for ignoring a bedside call buzzer, or leaving someone "dirty" in bed, or allowing them to go without a daily bath. I hope the facilities you go to have people like this who sincerely want to address people's concerns and respond to complaints.]
    Secondly, before I got off topic, this thread was about (not) having the right to refuse a mandatory HIV screening before childbirth, which many consider offensive and a violation of their rights. I agree with their position against mandatory testing.
    Therefore, the comment you responded to was meant to express, that I do respect their right to choose not to be tested for HIV. The reason I got snarky was, the hospital and staff should not be held responsible if a mother refusing an HIV screening (losing the opportunity to take proven measures to greatly reduce the chance of HIV transmission), or breastfeeding her baby against medical advice, resulted in the baby contracting HIV, i.e. giving baby a fatal disease. A woman’s right to refuse tests and procedures for any reason, should be recognized. In return, I’d appreciate hospitals and doctors not to be sued for “allowing” babies to get HIV from their mothers while in the hospital. Thus the request for releases to be signed.
    About your response to me. Again, you are 100% correct. I wish health care professionals could do all those things for patients. Unfortunately, and as you well know, the very nature of imperfect medical science and imperfectly understood human physiology means quite frankly, that nothing can be guaranteed. [Bear with me.] Did you see my comment, “Doctors are not God?” I meant it. This is a world where people have been proven to keel over dead from taking a simple Tylenol, or go into arrest if a gloved hand even touches their skin (allergies, often unknown to the patient).
    Please read the warning label on any over the counter medication in your home, and please read the fine print on any consent form from your hospital. Those warnings are there for a reason: there have been proven cases of harm and death (there is NO perfect drug or treatment), even when not due to medical incompetence or error. Women and children in this day and age, can still tragically die from childbirth as part of a natural process, through no fault of anyone’s.
    A mother who is HIV positive, carrying a fetus which is HIV negative, however, represents a very manageable risk, if only doctors can be given the opportunity to help the baby at birth, i.e. mother allows herself to be tested for HIV, and appropriate measures taken to prevent transmission. Allow me to reiterate that many HIV positive people are completely unaware of their condition, despite being monogamous*, practicing safer sex, and feeling fine, thus a hospital is unlikely to simply take one’s word for it.
    *Can you also vouch for your partner always being monogamous, practicing safer sex, not engaging in high risk behavior such as sharing intravenous needles, and being HIV negative before ever meeting you to begin with? Mm. We’ve heard that one before. So why did I say it is not really necessary to test the dads or partners the way they do mothers? Because while unfair on the surface, how is an HIV positive man supposed to pass HIV to a baby?
    Now, about actual medical errors, oversights and incompetence, and I agree there is a lot, too much of them. I shouldn’t get into what national studies have shown about preventable harm and deaths caused to patients, because it literally scares some people away from hospitals and doctors.
    I am not a hospital administrator who has to worry about the bottom line, nor am I a doctor with pride and a reputation to protect. I am a nurse, and a new one, at that, still full of ideals. By definition (current curriculum, anyway), a nurse is a patient advocate who is meant to stand for patient rights. I agree wholeheartedly that hospitals and staff members should be held responsible for errors, oversights, and incompetence. They should indeed be required to do “re-do’s” for free, and if the harm is beyond their ability to undo, they should find patients someone who can do it right, out of their own pocket. [If the error is undoable, I believe the "re-do" part is standard, anyway, though they might have a crappy attitude about it.]
    I complain about lawsuits and liability, but in cases of actual error, oversight or incompetence (eg – this has actually happened in the US – someone in the birthing room attached the oxygen tube to the carbon dioxide tank, and furthermore, the staff did not notice it. So when the baby was born, it was given CO2, causing irreparable brain damage through oxygen deprivation. The baby survived, but this is a lifelong disability.), you are damned right that the facility and any responsible doctor or staff member should be made to pay. Pay for treatment and lifelong care of that harmed patient, if still living, as well as for pain and suffering, and punitive damages**, as well. Responsible staff should be disciplined, retrained, and if necessary, fired and permanently stripped of their licenses to practice. If I ever cause harm to a patient, even by honest mistake, I’ll probably be so shaken, I’ll give up the profession myself anyway.
    ** Here’s where lawsuits often get into the millions, on this alone. [In one notorious product liability case, the automaker GM was ordered to pay "six people who were severely burned when their Chevrolet Malibu exploded in flames in a 1993 collision," $4.9 BILLION dollars in punitive damages. For a single accident. In one car. Did I mention that no one died? A later judge reduced the award to only $1.09 BILLION.] The US will need some tort reform, if we do not want innocent hospitals and doctors (like many OB/GYNs) put out of business because of high insurance costs and fear of lawsuit.
    Recap: All concerns and complaints I have read on this thread are valid. In this OP, doctors and nurses want to prevent HIV transmission from mother to child. People’s right to refuse tests or treatment for any reason should be recognized (unless they have a highly contagious disease such as TB). People should recognize they are also responsible for direct outcome of exercising their rights, e.g. baby gets HIV, please don’t sue. And I am sincerely sorry for anyone who has had a negative experience with their health care provider, and hope they can find redress.
    God, I hope that covered it.

  45. A male
    Posted December 29, 2007 at 5:19 am | Permalink

    I am glad to hear of people’s experiences with home births, and am saddened to hear there are places in the US where homebirths or midwives are not allowed.
    abra abra: ” . . . to give them a GBS test I didn’t want or need, knowing that even if it was positive I was not going to be on IV antibiotics during the labor because I would be at home. Why was I going to do it? Because some nurse had nearly convinced me to do it FOR THEM, so THEY wouldn’t get ‘in trouble’ or whatever.”
    Is it possible they were trying to cover their asses in case there was some complication, and you had to come in to give birth at the hospital?

  46. Mina
    Posted December 29, 2007 at 9:09 am | Permalink

    “Because while unfair on the surface, how is an HIV positive man supposed to pass HIV to a baby?”
    Good point.
    The only such transmission possibility I can think of is that if he thinks it’s cultural genocide to drop a custom, and part of his culture says that sex with a virgin will cure him, and by watching the baby since her birth he becomes absolutely certain that she’s a virgin…

  47. SassyGirl
    Posted December 29, 2007 at 10:14 am | Permalink

    One thing to keep in mind is that YOU hire your doctor and YOU can fire your doctor. They work for YOU, not the other way around. YOU can always hire one who is more in line with your beliefs and fire the ones who aren’t.
    I have an awesome doctor who is also a professional midwife. She is in it because she wants to help people, not make the almight buck. When money was tight here and I wanted an IUD, she offered to do it for a reduced rate; $50. She once attended a birth for an Amish family and accepted a puppy from their litter as payment.
    While this may not work in an emergency situation, you kind of get what the hospital gives you, although, I have requested different doctors in the hospital before, it is well within your rights to fire your ob/gyn if you are not pleased with your treatment.

  48. A male
    Posted December 29, 2007 at 7:05 pm | Permalink

    “One thing to keep in mind is that YOU hire your doctor and YOU can fire your doctor. They work for YOU, not the other way around. YOU can always hire one who is more in line with your beliefs and fire the ones who aren’t.”
    Of course you are correct again. Seeing things from inside, I am very disappointed to see how many steps are to cover one’s ass to avoid lawsuits, like all those forms with small print. I spoke up in class and asked if the charting methods used were not “deceptive” and if families did not have a right to know, for example, that some elderly person who cannot testify for themselves, indeed “fell to the floor” (rolled out of bed, climbed over the rails, lost their footing to/in the bathroom, etc.).
    That one unsupervised patient (restraints are not allowed) fell down, particularly in the middle of the night*, is not the fault of an overworked nurse, but of the facility which would allow such unmanageable workloads as 20/29/36/60 patients each. I hope California sets a precedent for other states to legally limit patient/staff ratios.
    *On your next visit to a hospital or care home, please notice how many people have little tags on their gowns or clothes, with wires leading behind to their chairs or beds. Those are alarms to notify staff someone is trying to get up without asking for the help they require. Also see how many mattresses are directly on the floor with no bed or frames, so these determined patients do not simply climb over safety rails meant for their safety because they refuse to ask for help, and fall even farther to the ground. A person has a right to be and feel independent, but it is a different story when one has been judged (usually by family) unable to live independently because of disability or self-care deficits.

  49. Posted December 30, 2007 at 8:51 pm | Permalink

    An HIV + male can pass it on to the mom, who can pass it onto the infant through breastfeeding.
    It is typical and insulting to single out birthing moms and target them for mandatory policies. If it is just an opt out policy and it is mandatory for the practitioner to offer it, then I am OK with that.

  50. A male
    Posted December 30, 2007 at 10:38 pm | Permalink

    “An HIV + male can pass it on to the mom, who can pass it onto the infant through breastfeeding.”
    Yes. Perhaps the father or current male partner is where the mother got the HIV in the first place. But the man will not pass the HIV directly to the baby like an HIV positive mother can through the simple act of childbirth, or at least, not during the three days or fewer in the hospital. And wanting to prevent transmission through breastfeeding while in the hospital, is why some hospitals do not want to allow HIV positive or women who refuse the test, as is their right, to breastfeed, because the hospital does not know if it is safe. If mothers would like to refuse this advice or hospital policy, if any, they can give their babies HIV if they want to. To kill them.
    “It is typical and insulting to single out birthing moms and target them for mandatory policies.”
    Yes, it is against the rights of women and mothers to make testing mandatory. But in this case, testing a father immediately before childbirth, when there is no reason to believe he will pass HIV to the baby directly (sharing needles? sexual intercourse? blood transfusion?) is even more unnecessary than most feel testing a mother who can indeed pass on HIV to be. If you do not trust a man to be HIV free (there is no reason for me to believe anyone is HIV free), test him before the woman even gets pregnant, because that is the only time that matters for the baby. If a mother does not mind giving her baby HIV through bloody childbirth or breast milk, and kill them, that is her business, but release the hospital from liability.
    No one has explained how anyone other than the mother is going to give a baby HIV. And kill them.

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