19 votes

Ethics questions arise as genetic testing of embryos increases

11 comments

  1. [8]
    IdiocyInAction
    (edited )
    Link
    This is certainly a divisive topic; my opinion is that this is probably justified for congenital diseases though. Why? Because it ultimately reduces suffering, at a relatively little cost. I have...

    This is certainly a divisive topic; my opinion is that this is probably justified for congenital diseases though.

    Why? Because it ultimately reduces suffering, at a relatively little cost. I have seen firsthand someone with who died from a congenital rare neurodegenerative disease and it was a horrible experience, especially for the person who had the disease. Why is it unethical to not implant an egg? Hell, I will never have children due to my genetic history. Life is tough enough, even without a handicap.

    I don't quite know how I stand on stuff like choosing genders, or, hypothetically, stuff like sexual orientantion, if that was genetic, or even stuff like height or IQ-correlated genes. That is a far harder question to answer, because one could hypothetically arrive at a situation where one could buy a better genetic endowment for their kids, exacerbating the already huge chasm between the poor and rich.

    13 votes
    1. [3]
      Algernon_Asimov
      Link Parent
      I've read some of Professor Peter Singer's works on ethics, and one thing he says is that it is not immoral to kill a disabled baby even up to the age of about 2 years - because it's not a person...

      Because it ultimately reduces suffering, at a relatively little cost.

      I've read some of Professor Peter Singer's works on ethics, and one thing he says is that it is not immoral to kill a disabled baby even up to the age of about 2 years - because it's not a person until it realises its own personhood. The only people who need to be considered morally are the parents, because they're the ones who have hopes and dreams for their child (it's too young to imagine its own future) and because they're the ones who will be enduring a lifetime of extra work to care for their child. but killing the disabled foetus or baby itself is a nett reduction of suffering because any happiness it might feel during its life will be greatly outweighed by the suffering it will feel.

      It's hard to imagine killing a disabled baby once you've held it in your arms but, in his moral construct, a post-natal baby is just as much a non-person as a pre-natal foetus. Its moral status doesn't change until it achieves personhood, which is around 2 years old.

      I'm not sure I agree with him, but I find it hard to refute his argument. And I'm self-aware enough to realise that my primary objection to killing a baby is emotional rather than rational.

      I don't quite know how I stand on stuff like choosing genders, or, hypothetically, stuff like sexual orietantion

      This aspect hits home for me. As a gay man myself, I'm very aware that some parents would choose to not implant an embryo if genetic testing of the embryo identified any gene-markers for possible homosexuality. Is homosexuality just a genetic variation, or is it a defect? This is a question which doesn't really have an answer. But we're going to have the ability to reject or abort homosexual babies before we reach an ethical position about the value of homosexuality.

      10 votes
      1. [2]
        IdiocyInAction
        Link Parent
        I know about Singer and he came to my mind too. Infanticide for genetic reasons is actually somewhat common in tribal and early-state societies (if you want to appreciate civilization a bit more,...

        I know about Singer and he came to my mind too. Infanticide for genetic reasons is actually somewhat common in tribal and early-state societies (if you want to appreciate civilization a bit more, read about all the cruel stuff non-state socities used to get up to/still get up to), though that is probably not a moral/utilitarian, but individual survival type of decision. I personally find it really hard to even think about deliberately killing any person for those reasons, a lot of bad history comes to my mind there, even though Singer has some very well thought-out positions.

        The thing about homosexuality is difficult. I would never select based on that, but should it be allowed at all? I don't think gayness is a defect; studies seem to suggest homosexuals live fullfilling, good lives in liberalized western countries.

        4 votes
        1. Algernon_Asimov
          Link Parent
          I've read my share of history! I know that exposing unwanted or disabled babies on hillsides has been common practice at various times and places. Anything not forbidden is permitted. :) As long...

          Infanticide for genetic reasons is actually somewhat common in tribal and early-state societies (if you want to appreciate civilization a bit more, read about all the cruel stuff non-state socities used to get up to/still get up to)

          I've read my share of history! I know that exposing unwanted or disabled babies on hillsides has been common practice at various times and places.

          I would never select based on that, but should it be allowed at all?

          Anything not forbidden is permitted. :) As long as we allow people to select which embryos to implant and which embryos to abandon, they can make those selections based on whatever criteria they feel like. We would need to actively forbid the abandonment of embryos for certain reasons.

          But that then leads us into the uncomfortable situation that some people would simply end up with too many embryos (because the doctors have to implant more than necessary to make sure some conceptions "take"). What happens to the unwanted ones? If there's a law saying they can't abandon the excess embryos except in certain circumstances, they'll be forced to make more babies than they wanted. It's messy!

    2. spctrvl
      Link Parent
      Choosing your child's gender is already a huge problem in India. The practice of sex selective abortions has contributed to a gender gap that's nearly as big as China's.

      Choosing your child's gender is already a huge problem in India. The practice of sex selective abortions has contributed to a gender gap that's nearly as big as China's.

      4 votes
    3. [4]
      Comment deleted by author
      Link Parent
      1. [3]
        eladnarra
        Link Parent
        That's not possible, at least with this specific procedure. In fact, it's not possible with actual genetic engineering either; plenty of disabilities are acquired, stemming from an illness,...

        In the end, the goal should be to eradicate disabilities.

        That's not possible, at least with this specific procedure. In fact, it's not possible with actual genetic engineering either; plenty of disabilities are acquired, stemming from an illness, injury, or old age.

        It also begs the question of what a disability is. The medical model of disability couches it in terms of individual impairments or illnesses-- a person is disabled because they can't walk. In the social model of disability, people are disabled by society not being fully accessible-- a person is disabled because a building doesn't have a ramp for their wheelchair. Under the social model, the ideal solution for many disabilities is to increase accessibility, not stop people with those disabilities from existing in the first place.

        So what disabilities are necessary to eradicate? There's a genetic component to nearsightedness; should embryos be discarded if they're at higher risk for developing it, or is that okay because glasses are normalized in our society? If an embryo has a condition that means they'll need to use a wheelchair, how is that wheelchair different than glasses? Is the difference what we consider "normal," or cost, or some other factor?

        3 votes
        1. [3]
          Comment deleted by author
          Link Parent
          1. [2]
            eladnarra
            Link Parent
            I feel like you're making a lot of assumptions about what types of lives are worth living. Maybe you wouldn't want to use a wheelchair for the rest of your life, but plenty of people do and manage...

            But say you are born with a disorder that will pin you to a wheelchair for life, or be a mental fight each day. You cannot fix that. And I believe it is pure cruelty to give a life such a fate when it can be avoided.

            I feel like you're making a lot of assumptions about what types of lives are worth living. Maybe you wouldn't want to use a wheelchair for the rest of your life, but plenty of people do and manage just fine. (And I'd hazard a guess that you'd actually adjust, as most people do.)

            In fact, a lot of long-term wheelchair users talk about them in terms of freedom; it's why "wheelchair bound" has fallen out of favor as a phrase because it implies that the wheelchair is a burden rather than something which allows someone to do more. Folks do run into accessibility issues such as lack of ramps, which are a hassle to be sure, but there's nothing inherently "worse" about a using wheelchair than wearing glasses. They're both tools that let people do things their bodies otherwise wouldn't.

            I'm not totally against using PGD or eventually genetic engineering for certain things; I think it'd be reasonable to apply them to a disease such as infantile Tay Sachs. But discussions surrounding these issues (including this article) mostly ignore the very people who are able to tell us whether or not a condition actually makes existing "pure cruelty."*


            *Of course, disabled people are not a monolith so opinions will vary.

            1 vote
            1. [2]
              Comment deleted by author
              Link Parent
              1. BuckeyeSundae
                Link Parent
                Sure, but is that so much that life woulf no longer be livable for people who never experienced those things? I get it if you’ve already spent much of your life and career with a particular sport....

                Being in a wheelchair will still restrict you from hobbies, careers and other opportunities you otherwise could have pursued.

                Sure, but is that so much that life woulf no longer be livable for people who never experienced those things? I get it if you’ve already spent much of your life and career with a particular sport. There losing the mobility you were used to could wreck you. But for newborns? Yeah I doubt it.

                I have a very simple view on this whole debate, and it’s tied in with my thoughts on assisted suicide: people who have meaningful choice should be allowed to choose death for themselves (and no one else for them or for anyone else).

                The other thought is that we are at extreme risk of over curating our genetics, and risk killing our famous adaptability by selecting only embryos that would be “normal.” So from the onset I would want to restrict the application of this sort of research to life-or-death situations. “My child may have autism” doesn’t fly for me as a reason to risk this greater genetic catastrophe. Mild to moderate inconvenience is acceptable for the greater genetic diversity.

                1 vote
  2. eladnarra
    Link
    At first I was very surprised that so few doctors recommend preimplantation genetic diagnosis, but it made sense when it was revealed that the couple only learned about it from a genetic...

    At first I was very surprised that so few doctors recommend preimplantation genetic diagnosis, but it made sense when it was revealed that the couple only learned about it from a genetic counselor. That was my experience, too; it was one of the things I was told about during the genetic counseling appointment before they drew my blood to be tested. That's interesting, and indicates that there could be a gap in patient education for people who are diagnosed with genetic conditions as children or who have never seen a genetic counselor.

    I have a lot of personal feelings surrounding PGD. My mutation confers a high risk of cancer; it's not a certainty, so it's what one organization in the article described as "ethically allowed" rather than "ethically justified." I don't want kids, so it's irrelevant to me in that sense. But it's a bit unnerving to know that if the knowledge and medical technology had existed back when I was born, I'd have been discarded had my parents used PGD. (Of course, that also assumes the same sperm and egg would have combined in a petri dish to make my embryo, but whatever, it's all hypothetical.)

    So while it makes sense to me for diseases that are fatal early on in development, I'm not sure where you draw the line. If you asked me, "Would you rather have a high risk of cancer or not ever have been born?" my answer would be high risk, every time. There are things I can do about that, like regular MRI surveillance and maybe prophylactic surgery down the line. Someone who's going blind because of a genetic disease would probably prefer that to not existing, too. They can learn to navigate the world without sight, and the goal there should be to make society more accessible for them.

    My discomfort is actually pretty interesting. I'm comfortable not existing in hypothetical situations such as the wrong sperm/egg meeting or my mum having an abortion/miscarriage. But there's an added decision in PGD that is disconcerting. Instead of "I don't want a kid right now," it's "I want a kid, but not this kid, because this one faulty allele overrides anything else she could become."

    Anyway, I wish they'd talked to disability activists instead of just including an offhand comment that it troubles "advocates for the disabled." Discussions like this start getting into pretty murky areas of: "How much suffering is too much?" and "At what point does suffering negate the positives of being alive and existing?" When you only talk to doctors or parents, you miss the point of view of people who are currently "suffering," which provides insight into whether or not goal like "reducing suffering through nonexistence" is what we should be striving for.

    5 votes
  3. Sawses
    Link
    I'm studying biology and have experience in molecular biology labs, so this is a topic that is somewhat near to me. Moreover, I'm going into education, so I have a particular interest in children...

    I'm studying biology and have experience in molecular biology labs, so this is a topic that is somewhat near to me. Moreover, I'm going into education, so I have a particular interest in children and children's rights. Ultimately, we as a society deem an embryo at conception to not be worthy of moral consideration, except insofar as the mother is worthy of it. That means that it cannot be outside of the bounds of bodily autonomy for parents to choose an embryo based on any criteria they want--assuming one is pro-choice, anyway. Whether that criteria is sex, sexuality, IQ, genetic health, or even skin color.

    Of course, there are good arguments for not allowing parents to know most of those things, to preserve society. For example, China already values boys more than girls. How many more men than women would there be if every couple could pick whatever sex they wanted their baby to be? For that matter, if we could get more specific, do we have the right to choose things like hair color, right-handedness, or even some kind of specializations for enhanced endurance, at the cost of some other feature?

    From a personal perspective, I...honestly don't think I could morally choose to allow for a child to be born with something like Down Syndrome or GSS. I know that I'd rather not exist than suffer Down Syndrome, but who am I to make that choice for others? On the other hand, am I obligated to parent a child with that disability, if I can choose to avoid it? There really is no good answer.

    This is a good post, by the way! I'm glad to see hard questions, they're always the most fascinating.

    4 votes
  4. BuckeyeSundae
    Link
    One aspect that I think must be wrestled with off the bat is that this will be cost prohibitive to most people for a long, long time. So out the gate, we're talking about rich families who can...

    One aspect that I think must be wrestled with off the bat is that this will be cost prohibitive to most people for a long, long time. So out the gate, we're talking about rich families who can afford this sort of screening and planning to ensure they (and at first, they alone) guarantee their children will lead "healthy, normal lives." The empathy that comes through rich folk having the same sorts of genetic risks as everyone else (or more, if you're most European Royalty) could be lost. Forever. That's just a societal level impact.

    There is also the matter of the gene pool. Genetic diversity is an amorphous and difficult concept to grasp, but more and more decisions might select out the very genetic diseases and conditions that might in other ways protect humanity from unknown diseases (such as Sickle Cell vs. Malaria). We would become increasingly prone as a species to an unknown, untested disease that one of these disorders that we currently see as unwanted might protect us against. People making selfish decisions for their own personal convenience as parents more than out of any major concern for the quality of life of their child would be setting us up for this sort of catastrophic disaster.

    Finally, there's the arrogance of trying to suss out what is a quality of life worth living. Like this article indicates, the idea that you could decide that any risk of breast cancer for an embryo is unacceptable opens you up to deciding for your child that potentially experiencing breast cancer in their 50s isn't something worth living through. Who are you to make that decision for that potential child? Life comes with risks and pain, and there are a certain class of parents out there who cannot tolerate anything that throws off "their plan" for their child. Without careful regulation to ensure we're not going overboard, they surely will do everything they can to make sure their child exactly fits the way they expect their child to grow up.

    I don't want it to seem like I'm wholly against using PGD in all cases no matter what. There are lots of infantile or young-adult genetic diseases (certain forms of muscular dystrophy comes to mind) that I think you could make a great case to screen for. But this is somethign that I start of with a heavy skepticism that people will use it well or carefully without massive runoff consequences for humanity and society.

    1 vote