Is This Why It Is So Hard To Talk About Regulating ART?

I’m finding it harder to get back into the rhythm of blogging than I expected so I start today with a two pronged plan.  First this short post, which takes off from current events but is a little reflective, and then a second short post on a more topical news story.  One way or the other ought to get things moving (for me, I mean.)

The more reflective first:  One topic that comes up for discussion fairly frequently is the need for regulation of ART.   This can arise in so many settings.   You could think about donor-screening, for instance.   You could think about number of offspring.   You could think about the number of embryos that are transferred in IVF.  The list is really quite long.

I suspect that there might be broad agreement that at least some forms of regulation are warranted.  I would hope to find serious public discussion about some potentially valuable forms of regulation.

The problem, I’m afraid, is the current tendency of our political discourse to drive towards extremism.   Consider, for example, the current discussion about contraceptive coverage in health insurance.   I’m appalled at the comments Rush Limbaugh directed at Sandra Fluke.   The conversation these generated–whether or not Fluke is a slut (I certainly don’t think so) or whether Limbaugh is a misogynist (which it seems to me he is) may serve a lot of interests, but it isn’t exactly reasoned discourse.   It’s amazing to me to watch so many different players try to score points off the drama–Limbaugh obviously must believe his language plays to his listeners, the media believes it draws viewers, liberal causes are using it to rally the troops and so on.

The thing is, I think contraception may actually be less controversial than ART, so there’s every risk that discussions of ART regulation get hijacked in the same way.   I think the number of people who would assert that all contraception is wrong is smaller than the number of people who would assert that all ART is wrong.   I can understand the reluctance to begin a public conversation in which extremist views (and the rhetoric that accompanies those views) might set the tone.

I cannot help but think about this right now as I watch the whole birth control discussion with horrible fascination.    There’s really an urgent need for public discussion of some of these issues and yet it seems so hard to get to anything like intelligent and respectful conversation.   Sigh.

 

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24 responses to “Is This Why It Is So Hard To Talk About Regulating ART?

  1. I had never thought of it before but birth control does not treat an medical ailment. So in some ways it could be categorized as elective. I know it can be used to treat acne and regulate periods which is one way a prescribing physician might get around a block.

    I am very pro choice and very pro birth control. I do however like to really understand why I believe what I believe and so as I think about the fact that pregnancy is not a medical ailment I have to wonder where that puts me,

    • I am on birth control for a medical reason. I am not sexually active but when I am not on the pill I get debilitating cramps where I am pretty much in bed several days a month and am unable to work. So I consider that a valid medical reason since it’s pretty bad to be unable to work an entire week out of every month.

  2. Julie,

    I tried to have a conversation on another blog with a reproductive endocrinlogist (if you want me to post the link let me know). He ended his second comment as looking forward to a continued discourse – or something like that. So I responded with a few valid questions to his comment. Days later he still has not responded, primarily I believe because I hit the weak spots in his argument and he had no response. Long way of saying the players (i.e. companies) need to come to the table prepared to see where the existing flaws in the system is – I don’t think they are willing to do that. Sad indeed when there are so very easy to see real talking points to discuss, hash out, try, see results…it isn’t rocket science – it’s common sense that is lacking in the regulations.

    • I think part of why discussions about these topics tend to break down is that they are rooted (For some people? For all of us?) in morality. What I mean is that for some people contraception, say, is morally wrong. For others (me included here) it isn’t. Similarly for some people ART is generally morally wrong (the Pope takes this view, I believe). For others it depends on how it is used. And for some people same sex relationships are morally wrong while for others they are not.

      I think moral positions aren’t often particularly rationale but they are very deeply held. Thus, when we come to place where we disagree and the root of the disagreement is based on different views of morality we discussion can fail. But because people care deeply about the topics, you might continue to try to make your point and it just sort of spins out of control.

      There’s another thing at work, too, at least when we talk about law. I am inclined to think that almost all legal positions (my own included) are flawed. What I mean is that there will be hard cases where the results you get under a particular rule may be bad outcomes. You have to face the weaknesses and failings of your own analysis, but lots of times that is easier said then done. In the end it is about what trade-offs we make–whether the cost (the bad outcomes) of particular rules are worth it.

      To be a little more concrete—if I were a purist going on functional parenthood only, then the person who kidnaps the child and then raises the child for ten years probably ought to get to keep the child. This is, however, not an acceptable result to me. There’s a completing interest in having legal rights respected and so the child should (in my view) be returned to where the child started. Now I realize that this may actually be very bad for the individual child. It’s not hard to imagine a case where you could do less damage by letting the child stay where she/he is. But that cost, I think, has to be paid for the larger goals. And I take comfort in the belief that this won’t happen very often. But I have to acknowledge that cost, I think, to that child to be fair.

  3. Same reason nobody wants to address the fact that 51% (now a majority) of new mothers under the age 30 are unmarried. The conversation turns ugly with both sides taking extreme viewpoints.

    • Why do we care that they are unmarried? Is it concern for the welfare of the child? Is it that we think unmarried father’s are incapable of providing financial support and physical care to their offspring? Because they are required to provide financial support and physicial care to their offspring jointly with their offspring’s mother. Is it concern for the mother? Is it that we think only married women take good care of their offspring? Is she setting a bad example for her child by having premarital sex? Is she setting a bad example because she did not have an abortion? Is she setting a bad example because she was not loveable enough to marry? What exactly is it that we are so interested in there?

      • We should care because the children of unmarried women have a greater risk of falling into poverty (the majority of these unmarried women lack a college degree) and performing poorly in school (which affects the child’s potential to be self-sufficient as an adult). Those are simple statistical facts, not an assessment on the morality of single motherhood. Thus, if the majority of children born to women under the age of 30 are being a raised in a single mother environment then we should make sure that we’ve structured society in a way to help those families achieve success. Regretfully, we can’t have a rational conversation because both sides want to take extreme viewpoints and only discuss the morality of single motherhood. Meanwhile, children are suffering because of society’s inability to rationally discuss the new reality that children experience.

        • I won’t do an extended discussion here, because there is so much to say and it really warrents its own post, I think. Among other things I need to go and read what the study actually showed. As I mentioned before, unmarried isn’t the same as single. And even for those who are single, single by choice is different from single by circumstance. So there’s a lot to unpack.

          • Agreed. But, let me clarify. My only point is that it appears a new family structure (unmarried mother – whether she’s single or not) is the norm for under 30. I’d rather spend time ensuring that children in this new family structure have the same advantages as children born into the previous norm. I find this to be time better spent than arguing the morality of unmarried women giving birth. Sadly, it appears many people want to bog down in a morality argument rather than making sure the kids in this new family structure aren’t put at a disadvantage by our laws or customs.

        • So what your saying is that lack of marriage is not actually the problem merely an indicator of the real problem –
          which is that

          Many fathers are negligent in the care and support of their offspring
          Many mothers don’t place enough importance on their children’s education

          So you really don’t want to target unmarried parenthood so much as you want to have all parents make their children’s education a priority and have all fathers jointly providing care and support to their offspring.

          Those are really good goals.

          The fact that many unmarried parents fall into those categories does not mean that all do and in fact many married parents fall into those categories. If women had to be married in order to give birth, you’d see an enormous surge in divorce. Because for whatever reason the other parent of their child is not serious about them it does not mean they cannot be serious about their child.

    • Ah—a topic I’ve been meaning to get to myself. We’ll see how that discussion goes. (Just for the moment, note that “unmarried” is not the same as “single.”)

  4. Julie – I don’t have a moral stand on any of the issues you note in your reply to me. My moral issue is for the individual created. The right to know where you came from and the right to know or ask for your current health history. That is what my questions were based on, how that could be achieved in the current model, stats on updates or even change of address, education about that, refusing patients who don’t tell. They have to have standards set that protect the one created despite the fact that the parents are his patients – the medical ethical considerations have not been well thought out. It is a totally different reality than what medicine dealt with before and they need to assess how to incorporate the donor conceived individual into the ethical mandates.

  5. I didn’t mean to assign any particular moral stand to you and I hope that was clear–I was just thinking quite generally. I do think that discussions around issues that are grounded in moral judgments can be especially tricky for the reasons I mentioned.

    That said, the point you make here is a really good one and one to which I have probably not devoted enough attention. The patient or patients in ART are the would-be parents and so it would seem logical that standard medical ethics would lead the provider to focus on their well-being. Thinking about the potential child may not be part of the job description. At the same time, it may be that some/many doctors do so anyway and I do think that guidelines that get developed in the abstract are more likely to so so as well.

    But this is not to say that I disagree with you. Things change constantly in this field and there is much that could benefit from further scrutiny and discussion.

  6. Julie – I do think the medical ethical considerations up to this point have been solely focused on the doctors patients – as in the would be parents. I disagree that any guidelines developed have included the donor conceived medical ethics.

    Up until this point in medicine the lines in the sand have been clear – the patient is who the doctor is ethically required to protect and thus “do no harm”.

    The “but for” now comes into play – but for the doctor – the donor concieved individual would never be born (setting aside the turkey baster). If you use the “but for” it really makes you stop and think – who should be advocating for the donor concieved in the medical community. Who is there to guard and protect “that” patient – should there be an advocacy committee / doctor who acts solely on behalf of the donor conceived just like in any other patient. I think it is long past due.

    Doesn’t law ethics define that generally speaking you should not share a lawyer with someone on the opposite side of the court room from you? That one cannot adequately protect both clients opposing rights? Why would it be different in medical ethics?

    • Several things to respond to here.

      I was thinking of ASRM guidelines which, like them or not, have not been devised purely with an eye towards service to patients. (At least, I don’t think they have.) See, for example, http://www.asrm.org/uploadedFiles/ASRM_Content/News_and_Publications/Ethics_Committee_Reports_and_Statements/financial_incentives.pdf

      The “but for” approach is important but also difficult. You can say the same for lots of other people in the train of causation–lab technicians and such like. I don’t mean that this makes it invalid, but it is tricky. I wonder (and this is something I’d need to think more about) whether there is an important difference between having people think generally about the well-being of the people who will be created via their actions and thinking specifically about this one person or that one person. The this one/that one approach seems more problematic to me, because there’s so much individual variation as to who we are and what we need for happiness. The more generalized approach seems to better capture the concerns about donor-concieved people being able to know their lineage, etc.

      And yes, in law there are many concerns about conflicts of interest, which is what you are pointing to. I think it may be more important to be alert to conflicts because law is an adversary system–your lawyer is your champion in some sort of struggle with another. That’s not quite the description I’d offer of medicine (I hope). If I were a doctor and took a patient I could take other patients (I think) without worrying about whether they patients know each other or have entwined financial interests. My provision of treatment to patient A doesn’t mean I must give less good treatment to patient B. But still, conflicts of interest obviously exist and can be problematic.

      At the risk of going on far too long here, there’s a problem with the model of decision-making, too. A patient is expected to decide on treatment in consultation with a doctor. It’s up to the patient to define what is in the patient’s interest. But what if the patient is a child? We do not expect children to be able to make decisions about their best interests–that’s what parents do. You can see where this can lead to some trouble in this area.

  7. Ack – I had a complete answer and somehow I lost it.

    I read the link and don’t see what you are saying. The donors are their patients at the time of the donation so of course they are protecting them. Once the donation is complete then the prospective parents are their patients.

    As to the “but for” I can see how you could say it is a slippery slope but the buck stops at the doctor because he is the go to person. You are correct that the patient is in charge of their care – but the doctor is in charge of who he will or will not treat when it comes to an elective proceedure. If he is employed by a company then his choice is either follow the rules or quit based on his ethical conscience.

    I just feel very strongly that the time has come for the ARSM ? to draw a line in the sand and quit trying to straddle all sides for the sake of a buck. I read their ethical statements on disclosure and disclosure of donors (don’t have the link anymore) and while they appear to have good intentions it still lacks teeth.

    I also am very concerned when an org holds itself out as providing guidelines such as disclosure or maximum compensation for donors but then has no enforcement of those policies – and at the same time John Q Public believes all is well simply because the ART facility is a member of that org.

    • I do not mean to hold out that statement as unproblematic. Indeed, I don’t like it very much. See https://julieshapiro.wordpress.com/2010/05/17/having-it-both-ways/

      But I do think some of the general advisory ethics statements are efforts to deal with larger ethical questions and not be totally patient centered. Of course, in approaching those questions the organization has a perspective and it is clearly a pro-ART one. I think it is completely fair to call into question whether they are really watching out for the interests that need to be watched out for or whether they are really only watching out for their own professional interests. (I’m feeling a little uneasy here because of course the ASRM is made up of individual professionals and they have diverse views, so it’s probably unfair to treat them all as identical. But the organization does take its own positions, I think.)

      In the end, I do not mean to disupte your critique of the ASRM. I think it is pretty toothless.

  8. Adopted ones brings up a topic that I think is important: hypocrisy How exactly can they be so all in favor of truth telling and not tell them the truth about who they are related to? How is it possible to look a person in the face and tell them who they are not related to and then tell them its better if they don’t know who they are related to? Why is concealing that information to their benefit/? In what way does a person gain from having the doctor conceal the identity of their relative/s?.

    • I suspect you will not find this answer at all satisfactory, but it seems to me there is a difference between making a choice as a result of which you do not know things (and I’m thinking here of choosing to us an anonymous provider) and knowing things and choosing not to tell them (as if you chose a known provider but refused to tell who it was, etc.) and then between both of those and saying you don’t know something when you do know it. The last is clearly lying. The first is clearly not lying. The middle one it might depend on exactly how you handle it. You could quite honestly say that you know the thing and won’t tell or you could mislead.

      For me, lying is qualitatively different from the other things here. I think you could explain (or at least try to explain) to someone why you chose to use an anonymous provider. People might disagree with your choice, but you can discuss it in a principled fashion. And once you’ve made that choice, to some degree you are stuck with it. (This is why you should think carefully before making it.) You can explain to your child the choice you made and the reasons for it. They may not like it. Maybe you can try to change it via DSR or something. But none of this seems like hypocrisy to me.

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