For example, whether or not that poses a risk to perhaps the family or it might have implications for one’s employment. The fact of the matter is that if He had performed this CRISPR-Cas9 gene-editing operation in the United States, a similar fate would have befallen him. He jumped the legal gun, whether that of the FDA in the United States, or its Chinese counterpart. I mean, these days a lot of people receive advertisements from companies that offer personalised genetic tests where people can find out about predispositions to all kinds of diseases and traits, if you like, but often, you know, that information itself is inconclusive. The Nagoya protocol makes it clear what is required going forwards. It’s only a violation of your consent for your parents to alter your genome in the same sense that it’s a violation of your consent to choose to have you in the first place without your consent, under circumstances you can’t consent to. Well, they did break an extant law. “Owner…This, presumably, would be the parents.”. At least up to the mid 1800s, common law in noth England and the US treating children as the property of the Father. According to the official Chinese Xinhua News Agency, Dr. This is because the Food and Drug Administration has not yet approved of this technique for human beings in terms of reproduction. Justin Oakley: Yes, so in some ways talk of joint bank account really only captures the sort of microcosm of the idea, and in a way with certain kinds of genetic information perhaps we ought to become familiar with or get used to the idea that other people, not just of course one’s parents or perhaps one’s siblings, have a justifiable claim on that. That I ought, of course, ethically all things considered, to take steps to prevent it.’. But when they do (thalidomide, anyone?) Justin Oakley: Yeah, I certainly do, as more and more is discovered about the genetic influence on all kinds of diseases and other characteristics, and as people can obtain these pre-symptomatic genetic tests far more easily now than they could even, say, ten years ago. There are many reasons that one would want to forbid certain voluntary transactions, even absent fraud. Justin Oakley: That’s right. The answer emanating from the free enterprise philosophy is a clear “No.”. So the couple, if one of them finds that they’re a carrier for this particular disorder, then they can decide perhaps to test the foetus, if they become pregnant with it. Biological diversity, microbes and the Nagoya Protocol, We use cookies to ensure that our website runs as smoothly as possible. Your information is handled in accordance with the ABC Privacy Collection Statement. Is that the sort of consideration that might move a genetic counsellor in a case like this? Then of course there’s the tracing of the contacts of those who’ve contracted HIV. Alan Saunders: Ultimately then Justin, who does own my genes and does it really matter? Justin Oakley: That’s right. In this meeting experts from the Centre for Genetic Resources, DSM Nutritional Products, WUR, SINTEF and BaseClear will share their knowledge and insights on how the Nagoya protocol influences the discovery and industrial use of microbial strains. Yes, parents (guardians) “make vast decisions for the children, including medical ones, all the time.”  (I’m assuming that “vast” means “crucial for the rest of the children’s lives.’)  But it doesn’t follow that parents “own” their children, or that children are the “property” of their parents. The ruling by Justice Nicholas found that the isolation of the gene from the human body is the product of human intervention and isolated gene sequences are therefore patentable. While plants and animals are the most obvious sources of biodiversity, microorganisms are an integral part of ecosystems and actually make up a largely untapped genetic resource. In Cyprus now for almost 30 years it’s been compulsory for couples intending to marry to obtain a premarital genetic test for thalassaemia, because there’s a particularly high incidence of that genetic disease in Cyprus and it’s one that without treatment reduces your life expectancy to about five years of age for the child that’s born with it. Note: owing to RN's live broadcast from the Sydney Writers' Festival, the Philosopher's Zone will not go to air this Sunday. I mean, my experience is that people in the medical profession who face serious ethical problems tend to be utilitarians; they want to promote the greatest good of the greatest number. Should He and his colleagues have then been found guilty? He’d been seeing a therapist over his obsession and the ultimate result is that California and other states now hold that there is a duty to warn potential victims. Is genetic information personal information, which belongs to the patient being tested, or does it belong to all the patient’s genetic relations? Indeed, I would argue (pulling from AV Dicey, James Coolidge Carter, Pollock & Maitland, Adam Smith) that the vast body of Common Law is figuring out where these boundaries lie. But for the rest of us, including the law as it stands in the USA and elsewhere, many other kinds of relationship exist. According to the defense, He did not hide these from the mother and father. Did they receive informed consent from the supplier of the service? I mean, we’ve just seen here in Victoria the Law Reform Committee has just come up with a recommendation about donor-conceived people, who are born through anonymous sperm donation, that they should have access to the genetic information about their donor even in cases where that donor had been assured that those details would be kept confidential. Let us, however, abstract from this finding. For example, Hurtado-Ortiz and co-workers at the Institut Pasteur, which houses the largest bacterial strain depository in France, reported that around one third of the 15,000 strains in their bacterial strain collection did not contain essential information including the date and location of collection. That’s what’s often argued, but I disagree with that. Doctor He Jiankui was sentenced to a three year prison term, fined $430,000, and fired from his academic position as Associate Professor at the Southern University of Science and Technology in Shenzhen, China. Alan Saunders: So, what we’re talking here is the tension between maintaining confidence in the medical profession and a third party’s right to know about threats or risks to him. The author of the original post asks, “We start by asking, who were the owners of the property in question? Justin Oakley: I think in countries that have a particularly high incidence of a disorder where it’s a very serious disorder like say thalassaemia, I do think it’s justifiable for the state to use some sort of compulsion to encourage or perhaps even stronger, you know, to force people to obtain a genetic test, but I would only say that in cases where it’s a very serious genetic disorder, as we’ve seen with thalassaemia, and also I think the important rider on that claim is that couples need to be free to do with that information what they wish.

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