Bioethical reflections on disability, medicine, and family life

[This is the sixth post in a series highlighting a public dialogue held at the University of Alberta on October 23rd, 2008, titled The Modern Pursuit of Human Perfection: Defining Who is Worthy of Life. The dialogue was sponsored by the What Sorts Network, in conjunction with the Canadian Association for Community Living and the Alberta Association for Community Living. This series will bring forward the videos made of this event twice a week, roughly every Wednesday and Saturday. For further context, please see the introductory post in the series, which can be found here; we’ll string together all posts in this series when we have most / all of them up, or you can search by the category “Modern Pursuit” to get those already posted.]

In the clip that follows, we make the transition from the personal stories of Wendy, Sam, and Colleen that have featured in previous posts in the series, to the reflections of Simo Vehmas that marked the beginning of a segue to discussion of those stories. Simo is a leading philosopher of disability from Finland who was able to join us for a few days, and here he offers some bioethical reflections on disability, medicine, and family life in light of those stories. Respect for parental choice is an important guiding principle for bioethicists, though each of the stories from Wendy, Sam, and Colleen question how well medical practice follows that principle. But there is another aspect to parental choice–the choice not a parent a child with a disability–that comes up in Simo’s comments–that raises other questions, as we’ve seen in several posts in the Thinking in Action series, such as this one on Singer on parental choice and Ashley X, and this one on Adrienne Asch vs Jeff McMahan on the “ethics of exclusion”.

In the next post, which will introduce Dick Sobsey‘s reflections, we’ll see this issue taken up again, and in the discussion posts to follow thereafter in the series, it becomes more hotly debated. But if you want to jump start further debate right now, feel free. Video and transcript beneath the fold.


Simo Vehmas: After hearing those sorts of stories, it’s a bit difficult to be academic. So, I’ll try to be academic. As a concept, disability, especially in the UK but also in Canada and the US, disability is largely understood as a form of social oppression. So it’s, an equivalent term with racism and sexism. And when I say this, if you say this to just about anyone, when I tell this to my students, they don’t get it. It’s like they don’t understand, “why on earth, I mean disability has got nothing to do with oppression. We take good care of these people.” But if these kind of stories were heard more often, they were more in public, then it would be easier to understand it. From the Finnish perspective, when I’m listening to Wendy and Sam, the crucial, like the biggest, one of the biggest issues or the ethically most troublesome issue is one of the directedness, to what extent doctors should try to avoid being directed. Because in medical ethics, one of the basic principles is respecting parental autonomy. So, any sort of forcing people or directing parents to do some sort of reproductive choices is unethical. And what Wendy said about the doctor making an appointment for her abortion without consulting her is not only immoral it sounds to me pretty criminal. And I’d never heard anything like that before happening. It’s shocking. But, so the problem is, what kind of information should be given and how it should be given. Because, there’s no going back, even through like a prenatal diagnostics and treatment, prenatal diagnostics and abortion, we all know that it’s a very difficult ethical issue. But then again, parental autonomy is the kind of principle, there’s no going back. So, even though I think prenatal abortion is I think very problematic practice, we can’t make it illegal, so the problem is how to carry out these if some people choose to terminate a pregnancy because of the disability and there are people who want to do that. So, what should we do that we don’t direct people to do this, because at the moment we are doing that. There are studies in Finland that about 80 or 90, somewhere between 80 and 90, so almost 90 percent of women who find out, who are told that they are carrying a child that has Downe’s Syndrome, almost 90 percent of them terminate the pregnancy. And if that’s the percentage, then something is terribly wrong. We can tell that it’s directed. So, and one of the problems is that the information given is purely medical. Doctors think, and they concentrate on giving purely medical facts, and for instance, if it’s about Downe’s Syndrome, they tell that Downe’s Syndrome is this kind of condition that there may be intellectual disability, there may be heart problems, there may be problems with whatever, and if you just give a list of what sorts of problems can happen, then the picture is pretty grim. And if you give this kind of information to parents who really don’t know, who have never met people with Downe’s Syndrome, who really don’t know what it’s like to live with that condition or what it’s like to have that kind of child, that is very directed. If they don’t get any socially significant information that helps them to understand what it would be like to live with that kind of child with that particular condition. But then again, so, the problem usually is, in the case of prenatal diagnostics that the information you’re given is too directed. But then again, there are cases where doctors should be directing. I talked today to a pediatrician who said that he saw a problem with premature babies. He said, “nowadays, doctors can even save babies being born on the 22nd week or 23rd week of a pregnancy. Which in most cases means, if everything is being done, they create a life that is very short and full of suffering.” And in that case, if doctors ask parents, “well this is the case, we can do this or this, it’s up to you, it’s your choice.” Most parents will say, do everything in your power, well then in this kind of case you should ask, well is there really a point? Should doctors actually direct in these cases? And should, and, at least in Finland, nowadays doctors tend to do everything in their power to save all lives, at least that’s the principle. But if we can do something, maybe it doesn’t always imply that we should do it. But drawing a line when live is just misery and just not worth living is sort of very hard to draw. And maybe sometimes we should do it and need to do it.

2 thoughts on “Bioethical reflections on disability, medicine, and family life

  1. Pingback: Decisions and Dishonesty in Medicine « What Sorts of People

  2. Pingback: The Denial of Parenthood and Selective Abortion « What Sorts of People

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