Tuesday, July 14, 2015

Bioethics is everybody’s business

Bioethics is everybody’s business

Twitter: @Oosterenvan

“Bioethics”: what is it? For some it may sound like a highly technical discussion about new technologies transforming human life, like human cloning. This is in fact the example provided in the definition of bioethics in a famous French dictionary: “Cloning poses a bioethical problem.” Others associate it with controversial medical issues like euthanasia: helping a person to end his or her life to avoid extreme and hopeless suffering. In sum, bioethics looks like a discussion that seems very complicated and – like we say in Dutch – “far from our bed.”

But bioethics isn’t far from our bed for several reasons.

First because we’re equal with regard to at least one thing: our lives will end. And most of us will have to deal with suffering before we die. Medical science can avoid unnecessary suffering, so what will be our wish once we get there? This is clearly an important debate that concerns us all here and now, before it’s too late.

Secondly the beginning of life poses bioethical challenges too. Imagine you or your girlfriend is pregnant and a routine prenatal test reveals that the fetus has a serious disorder. The doctor tells you that this disorder will probably cause your child to suffer and that it will reduce its life expectancy to 20 or 30 years maximum. Imagine the responsibility for you as the future parent of this child. This situation can happen to any of us, or to our friends and families. It’s a situation in which you need something to go on. That’s what bioethics is for: it helps you ask the right questions like what’s most important for the child, what are the medical statistics, what do they mean for your case and so on.

You might think: “this is just a very extreme situation, it won’t happen to me.” Hopefully you’re right. But there might be other medical problems on the path of your children that can be identified. But do we need to test for all potential problems? Of course not. But DNA techniques are becoming so good and affordable that it might soon be a matter of routine to know what the future medical history of a child will be like. And maybe it’s not you but a family member who finds out that there’s a “risky gene” in the family, because DNA-tests are available via the internet. In other words: before you know, you know what's coming and then you have to deal with it. Unless we decide what we want to know, when and how.

This is exactly the type of problem that bioethicists address. Like in this article in Nature (see this link) written by Annelien Bredenoord, a Dutch Senate Member, and Hans van Delden, a Dutch member of UNESCO’s International Bioethics Committee. They note that on the one hand it’s getting increasingly easy to learn about genetic risks but that on the other hand the ethical basis for dealing with this information hasn’t evolved much. The authors agree that it is good to keep the child’s future open by not informing him or her about incurable diseases it has a good chance to develop later. But for them this doesn’t mean that it’s unethical to run a complete DNA-test on the child that would reveal this information. The ethical matter is not the test itself, but our decisions as to how and when its results will be disclosed to the child and its parents. A bioethical debate can help propose options for this.

As complete DNA-tests will soon be cheap and possible anywhere on the globe it’s obvious that this debate needs to be global. In fact most bioethical dilemmas are global because, a UNESCO report puts it, “what becomes legal in one single country becomes allowed” (see this link). Take the practice of gestational surrogacy. As this practice is not legal on French territory, France refused to recognize children born to surrogate mothers abroad as it would “encourage this practice”. However the European Court of Human Rights found that this would undermine the children’s identity in France and ordered France to recognize them anyway. In this case a human right, the right to family life, came under pressure due to a lack of international bioethical consensus regarding a medical practice or technology.

To reach consensus on important bioethical aspects of human life, UNESCO’s Intergovernmental Bioethics Committee (IGBC) will gather in Paris on 16-17 July 2015 to discuss bioethical issues (see this link). Experts from 36 governments will try to provide a basis for consensus and guidance for all countries of the world with regard to bioethical dilemmas. This debate will address fundamental values in the field of bioethics which are not a business of only governments, philosophers, doctors and pharmaceutical companies. They are everybody’s business.

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