Few things are scarier than when scientists start debating ethics.
A current debate in the scientific community involves whether it is ethical to publish your genome sequence without asking permission from family members. It is increasingly common for people to pay to have their genome scanned for the presence of traits, including genetic diseases. Scientists agree that releasing this information without the permission of the individual whose genes are described would be a clear ethical breach. The controversy involves whether an individual is ethically obligated to get consent from family members before publishing his or her own genome sequence, since to some extent that means publishing theirs as well.
The argument proceeds from the unauthorized release of someone’s genome sequence by a third party to the plight of an identical twin whose sibling wants to publish his own sequence, which, of course, also describes his twin’s. This is ethically clear too: it would be wrong not to seek permission. But what about the rest of the family?
The level of ethics comprehension shown by those engaged in the debate is depressing. One scientist argues that it may be “nice” to ask for consent, but not “necessary,” meaning that there is no law requiring it. I think it is more than “not nice” to reveal to the world that your politician/ business executive/ judge/ brain surgeon sister has a gene that indicates future neuro-muscular disease or premature senility. I think it is not just “not nice” to reveal that my brother carries the gene for Huntington’s Chorea as he seriously discusses marriage with the love of his life. “Nice” has to do with kindness and etiquette; this is unethical: unfair, irresponsible, a breach of autonomy, respect and caring. And “not nice.”
It is also a Golden Rule violation, but few scientists “get” the Golden Rule. They tend to like utilitarianism, of the extreme “ends justify the means” variety. Randall Parker, a no-consent advocate, writes:
“Crowd sourcing genetic data, health history, dietary choices, adverse drug reactions, food sensitivities, physical attributes (e.g. height, hair color, weight, eye color, facial shape, finger length ratios), cognitive attributes (e.g. online IQ test results, educational attainment), and other personal information has the potential to greatly speed up the rate of discovery of disease causes, the meaning of many genetic variants, and other areas of understanding of human health and human nature. In my view the people brave enough to publish their genetic results (whether under their own name or with their name hidden from researchers) and other information about themselves are doing us all a great favor.”
“Us all”…except, of course, those individuals who don’t want their genome published. His argument would hold for both the third party publisher and the identical twin. Publishing one’s genome advances human knowledge, that’s what matters. So what if it ruins a family member’s life?
Parker convenient reduces the argument to “our social responsibility to family members and whether we are all autonomous beings without obligations that come as a result of who we are related to.” What nonsense: has he ever heard of ethics? Ethics involves a shared obligation not to do harm to others, whether they are family members or not. He then resorts to classic “Everybody does it” rationalization, with a nasty “those non-scientists won’t understand anyway, so why ask them?” twist:
“The early adopters of genetic testing and genetic sequencing understand it better than the larger public on average. When full genome sequencing costs fall to the few hundred dollar level and full scale genetic sequencing becomes commonplace most people won’t understand the detailed consequences of full disclosure. Of course, people do things all the time which have consequences that they are unaware of. Should we treat this any differently? I doubt it.”
Yup: because people stupidly put things on Facebook without realizing that they are wrecking reputations and harming others, it’s OK to publish other people’s genetic test results too!
In fact, this isn’t a difficult ethical question at all, except for scientists. Of course it is unethical to reveal your family members’ genetic information by publishing your own, unless you have their informed consent. It doesn’t matter whether they speak a different language from you, or are dim-wits, or whether you see them on Thanksgiving, or hate their guts. And the answer to the rationalization that informed consent can’t be obtained because the family members won’t understand what they are consenting to? That doesn’t mean that it is ethical to publish; it means that under those circumstances you can’t publish—because if you can’t get informed consent, it is unethical to publish. Period.
The Personal Genome project says this about the issue:
“Your publicly available DNA sequence data, trait data and other information will include certain information that applies to your family members. Some people may draw conclusions from your publicly available information, including speculating about what such information might reveal about you and your family members. As a result, the PGP cannot predict all of the risks, or the severity of the risks, that the public availability of this information may pose to you and your relatives. You are strongly encouraged to discuss this study and its potential risks, including the fact that not all of the risks are known, with your immediate family members.”
“Strongly encouraged,” because it is the right thing to do. Because you would want to be treated the same way. Because it is fair, and responsible.
The real problem we need to address is why scientists have such a hard time understanding and embracing basic ethical principles.