Monday, April 16, 2012


I remember the first time I saw Gattaca. Being your average science geek, I was immediately engrossed by the story line, following the hero as he fought to achieve his dreams in a society that dictated class based on one's genetics. What made Gattaca particularly provocative was the idea that one could use preimplantation genetic diagnosis (PGD) to select embryos with desirable traits. The movie goes on to show class separation for these designer babies from those conceived through traditional means, painting PGD as a tool for discrimination and portraying reproductive technologies in less than desirable light.

It's no secret that reproductive technologies are still viewed in a negative light. I've written before about the bad rap IVF gets from those who have not been touched by infertility. PGD is an even hotter issue, thanks to movies like Gattaca. The idea that one can create "designer babies" sends your average individual off on a tirade about the evils of "playing God." Rarely do the look at the actually uses of PGD, such as screen for embryos that are chromosomally abnormal and helping eliminate detrimental diseases such as cystic fibrosis. Mainly because many are ill-informed.

This morning, I received the following email from the WA Chapter for the Association for Women in Science (AWIS):
Association for Women in Science (AWIS) Invites you to
Join us for a Discussion about Bioethics, this Wednesday, April 18th.
Bioethics Discussion on Human Genetic Engineering: Why I Love Designer Babies?
Featured Speaker:Kathyrn Hinsch - Founder and President of Women's Bioethics Project
I felt like I had been punched.

A quick Google search on Ms. Hinsch reveals a biography of someone who has what I consider a superficial view on the subject matter. Add in flyer attached to this email, where she uses Gautam Naik's Wall Street Journal article to launch into her dissection of the "designer babies" topic and I found myself growing angrier by the minute.

The more I read, the more it became clear that this women has no idea the horrors of infertility. I have no idea if Ms. Hinsch has children, but I suspect that her ability to conceive and bear them has never been called into question. Add in the fact that her flyer does nothing to talk about PGDs current uses and we now have a discussion that is ripe of misinterpretation.

I feel Ms. Hinsch is adding yet another layer of discrimination against the ALI community. That her discussion on Wednesday will result in a one-sided argument against not only PGD, but fertility treatments in general. That anyone who pursues IVF will be villainized and considered "selfish." All of this coming from a majority who will not be faced with traumas caused by infertility and loss. And I'm not happy about it.

Tonight, I'm trying to figure out what to do. Part of me wants to attend this discussion solely to punch as many holes in Ms. Hinsch argument against PGD. But the other part of me feels that this may be exactly what she's hoping for. After all, everyone remembers a heated discussion. In addition, I'm still in the process of healing. As wimpy as that sounds, I know I'm not at my best, meaning it's quite possible that I'll do more harm than good. In addition, it's entirely possible that I'm making a mountain out of a mole-hill.

In short, I'm asking for help. I need some advice on how to proceed. What would you do?


  1. Wow... I would feel punched too ! I'm doing PGD... and have tried to gapple with the ethics of it, but know that it's only screening for genetic abnormalities that would be 'incompatible with life' i.e. embryos that would be unlikely to implant or, if they did, highly likely to miscarry. This is really the only option we have left to safe potentially numerous failed cycles... and the toll this has on mind and body. I would find it very hard to go to this debate... but equally torn about wanting to help present the IF view. I agree that it sounds like she's unlikely to have had IF issues... and it's difficult to know how confronting her debate might get. A difficult decision... but if I had the option to go, I would probably sit it out. I don't know that I could cope with more criticism of what we're going through and the choices that we make as IFers... esp from others who may not have experienced it. Can you get a copy of the session on DVD to watch at a later date ? Thinking of you as you make your decision... either way, it would be hard to go or to miss out xoxo

  2. Egads. This is just the sort of marginalizing of infertility treatments that we all hate. I'm sorry you received that email and even sorrier that such a "debate" is taking place.

    Might I suggest forwarding it to Resolve? Or Keiko at The Infertility Voice? Maybe they could try to bring some balance to the discussion or help in some way?

  3. Yikes! Could you write her a letter to have her hopefully express and read at the presentation? It would help you feel as if you had done something at least.

  4. I would DEFINITELY forward this to your local Resolve chapter. While you could not keep me *out* of that room Wednesday night, I totally understand that you're in a pretty raw place right now and it might do more harm than good. It would be a shame though not to have representation from the IF community to at least present the other side of things so maybe someone else in the group could pick up the ball for you (and the rest of us!).

  5. This is so unfortunate. I wish people thought more about the consequences of what they say and how they say it. PGD is by necessity only used along with IVF and so it would seem to me that a thorough discussion of it's typical uses is also essential to her discussion - at least to provide people with some general education about PGD.

    Can you hold off on making the decision of whether to go until just before the event? Then if you're feeling like it would be upsetting or traumatic, you can skip it, but if your curious or angry or just want to go, you can. But then sit on the aisle in case you need to leave.

  6. Will be honest...lost my first son two and a half years ago the day after he was born. (Full term, IVF pregnancy). Just lost my third child a week ago today (twelve weeks, no reason...other than I'm probably old). All three of my pregnancies (living 15 month old in between) were IVF and I am a pretty conservative and most would consider religious person. That said, cannot, cannot, cannot imagine my life without the hope of IF technology, even with more losses than bring-home babies, and can't really even begin to imagine discussing something so very close to my heart with anyone who'd have the audacity and nerve to make judgements or assumptions about any of us, I mean those of us desperate to mother...desperate to love and raise a child, and knowing that technology can help and does every day. INCLUDING PGD. Heck, especially PGD. I don't know how I personally feel about it because I haven't been faced with the need to think about it, but as you said, doubtful that woman has had to think about it either, other than in a way to stir stuff up, and frankly, your wounded heart doesn't need that right now (in my opinion.)

    Sometimes, it's just easier to remember you can't argue with ignorance. And that's what it is.

    Again, sorry for your losses...wish none of us had to deal with any of this.

  7. Total crap. I agree with the ladies above. Forward the information to Resolve and anyone else who will advocate openly in your place. Write a letter as well if you are so inclined. I think people who have not been in our situation should not ever judge those just looking to have a healthy and successful pregnancy. It's all so one-sided.
    No matter what you choose to do, I appreciate your even considering taking her on.

  8. Bio-Ethics was my very first college class and I have to say I loved how it made me think about things like I never would have before. I loved the movie Gattaca.

  9. I can totally understand your anger on this - I agree with all the ladies above. I sometimes wonder whether some of our friends whom we have told about our IVF, agree with this sort of thinking. This sort of thing would only add fuel to the fire. Makes my blood boil!

  10. I agree with the others that someone from the IF community should be present at the talk. If you don't feel that it's something you can do right now (which is completely understandable), I'd contact RESOLVE and see if someone else can attend.

    Please keep us updated.

  11. i wish i could do pgd , but it isnt available in my parts of the world...anyway i think u should go to the discussion, you may just want to sit and listen and not air any of ur views or u just might find that going and speaking up will make u feel a whole lot better!

  12. I attended this discussion for my journalism class.
    PGD was actually not the topic of this discussion. The topic was inheritable genetic modification, the alteration of the gene sequence at the very earliest stages of fertilization. It is not currently practiced on humans but scientists have the capability to do so in the next few years. If you are interested you can read more about it here

    If it makes you feel any better there was absolutely no bashing of IVF or PGD practices.
    Most people in attendance were in favor of inheritable genetic modification for the purposes of removing hereditary disease-genes but the concern was that it would become commercialized and might lead to eugenics issues.

    1. Thanks for the comment. I'm pleased to hear that the discussion did not go the way I worried it would. BUT, this was not how it was advertised. The wording from in the flyer suggested something entirely different from what you described. And I've seen more than one presentation on similar issues where the speakers intentions were nobel but the audience left with an entirely different viewpoint then the intended one.

      My suggestion is that Ms. Hinsch needs to rewrite her flyer. She needs to clearly map out what she will be focusing on for her discussions and she needs to spend some time talking about the benefits of PGD. Because she is currently not doing this and, if what you said is true, was lucky to land an audience that was able to not misunderstand her intention.


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