Genome Sequences, Consent, and Scientist Ethics

What...you don't trust this guy???

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.

35 thoughts on “Genome Sequences, Consent, and Scientist Ethics

  1. Can there be anything more private than the very information that defines someone’s physical being? What ever happened to physicians’ confidentiality? Clergymen and doctors have an historically recognized obligation to confidentiality for what they are told professionally. This, however, manages to go beyond that. DNA sequencing is a remarkable tool for diagnosing diseases or predicting their prevalence for the future, but the same professional standards that apply to any medical history must apply here as well. A person’s genetic pattern doesn’t only apply to him or any possible twin. It can apply to an entire extended family… and on into the past. One example of this was the Sally Hennings scandal that involved the personal reputation of Thomas Jefferson.

    • Except with the Sally Hemmings scandal there was also other evidence that pointed to him being the father of the children. That and members of Jeffersons family aknowledged them as being fellow desendents.

      • You missed my point, Bill. This is why I was commenting on how this kind of information can impact others. All that the DNA sequencing of Sally Hennings’ descendents proved was that a member of the Jefferson family had sired a child by her. That did not, however, point the finger squarely at Thomas himself. This was merely assumed and picked up by the press. Other male members of the Jefferson family also frequented Monticello. But this information was used to cast aspersions on Thomas Jefferson’s character, he being the architect of so much of America’s political heritage. The truth is that there is no way to pick out an individual by these methods. And neither Thomas nor Sally are here to enlighten us.

        • I agree with you that this information can impact others but I think the example of Jefferson and Hemmings isnt the best as there was other long standing evidence that he was the father.

          I dont think it cast any aspersions on his character, taking a concubine was an accepted pratice at the time. Also people always ignore that she was the half sister of his late wife Patsy, and was apprently her spitting image, so how far of a strecth is it to see him having strong feelings for her?

          • The point, Bill, is that one can only speculate, as all possible parties are long dead. The publication of this information thereby not only affected the reputations of these people of the past, but the lives of their descendents. This is not only true of prominent families, but of all. Thus, the Jefferson case well illustrates the problems that the release of such naturally private information entails.

            • Steven I understand your point and if the famlies on both side hadnt been involved I would agree. But since members from both families particpipated I cant see any problem with it. Now if either the Hemmings or Jeffersons had not been inolved and objected I would completely agree with you.

              • That’s a good point, Bill. I was just commenting on the ethics of doing it without approval, as Jack was alluding to in his article. I can’t help but think, though, that both families made a mistake in dragging it up in public.

  2. These scientists appear to be unburdened by the presence of a simple conscience. The only real way to get to them might be to publish their own DNA sequences. To do so in fact, and not as a “thought experiment,” would apparently be necessary to get through to these people. Anyone up for this high-tech version of “Watergate burglary?”

      • Just meant to say that hiring some high-tech operatives may be in order; was not intending to compare knowledgeable intent of Watergate burglars, just looking for technical competence to get the job done. I would assess the scientists whom you describe as not necessarily ignorant, but simply insensitive and arrogant. They have to be aware that exposing one person’s DNA signature exposes his/her family members’. In these ways, they compare to the religious right, that advancement of scientific knowledge is justified over all, as an overarching dogma removing individual choice and rights to privacy. They just profess a different religion.

        • In these ways, they compare to the religious right, that advancement of scientific knowledge is justified over all, as an overarching dogma removing individual choice and rights to privacy. They just profess a different religion.

          Good strawman. I’m pretty sure nearly every scientist on earth would disagree with the statement “advancement of scientific knowledge is justified over all…” That “overarching dogma” doesn’t exist.

          They just profess a different religion.

          Well, I guess when you’re willing to make up what scientists think, it makes sense that you’re willing to make up what scientists think.

          • Sorry, but you seem to have a personal vendetta which is clouding your ability to make a thoughtful response. I specifically said, “scientists WHOM YOU DESCRIBE,” thereby limiting the discussion to the ones whose opinions are the topic of Jack’s post.

    • Which sarcastic response should I use?

      “Yes, it’s a shame we were able to end the history’s largest war swiftly, and without a land invasion of an enemy that swore they would fight to the last man.”

      “Yes, if only scientists considered the morals of the general populace when making their explorations, like every time we heard the religious authority cluck that Man was Not Meant to Know something, like heliocentrism or the vaccine.”

      “Yes, it’s a good thing that scientists refuse to use their magic scrying telescope from the planet Mercury that tells them WHICH scientific endeavors will lead to good and bad things.”

      The funny thing is, I don’t even disagree with you. My brother took a class on Ethics for Science Majors or something and was astonished how many of them didn’t even GET what the problem was. “So, you’ve constructed a laser that can take people’s bones out of their body and turn them into a cracker. Is it ethical to shoot this randomly at people because you’re in a big line and Dancing with the Stars starts in ten minutes?”

        • I might also add that Germany and Japan (with German aid) were working on a bomb as well. Japan was also working on a chemical arsenal to use against invading troops, having used Chinese prisoners (among others) as living guinea pigs in testing the agents’ effectiveness. In mid-1945, through a huge project, America had but together enough fissionable material for only three atomic bombs. Operation Olympic (the invasion of Kyushu) was already planned and it had become a matter of an immediate decision. Truman saw the statistics, made the only choice possible and the bombs were used. How many of us (including myself!)- and how many Japanese- would not be here today had he not?

  3. I haven’t been following the scientific debate in detail, and so cannot comment on how the scientists are scoring on an ethics scale (although the quotations you reproduce don’t seem terribly encouraging). However, I have to wonder whether this is as “clear-cut” a decision as you see it.

    After pornography, the most popular category of personal sites on the Web is genealogy. There are millions of people seeking (and thereafter publishing, since it all goes online) information about their family histories. This already will disclose some parts of the “human genome” of everybody else in the family. If I find that I’m related to Queen Victoria or any other female descendant in the the Saxe-Coburg line, the chances that I’m carrying a gene for hemophilia just went through the roof. Does Aunt Mildred, who prides herself on the web-based genealogy she is researching and creating for all of us, have an ethical responsibility to get my permission first?

    I think the answer is “no”, and if that’s true, what’s so different about a genome sequence? It’s a lot more detailed than the genetic information about my relatives that is already available to everyone with a laptop, but I find it hard to distinguish a difference in kind. Any genetic predisposition in me may be private information about my relatives, but I shouldn’t have to hide my (for example) baldness for fear that people would know, or think, that my father was bald too. (oops, bad example . . . )

    I think the issue is where on the scale you draw the line, and I would be happy to make the case that a complicated series of formulas and abbreviations should be kept private but that my uncle’s nickname “Cue-Ball” should not. But I don’t think it’s quite as up-and-down as it may first appear to be.

    • I’m going to follow this tack, but from a slightly different direction. Say I have Huntington’s, and want to become a public advocate about the disease. Is it unethical for me to reference that I have the disease if I don’t have familial permission? Should someone with obvious early onset Parkinson’s have to be cloistered so they won’t expose their relatives possible genetic flaw?

      • I think, as with Tom’s valid hypos, reasonableness is all. Someone should take reasonable measures to protect legitimate privacy concerns of others. One problem with the publishing of genome patterns is that it isn’t essential in any way. For your hypothetical…1) I’d say there is a obligation to alert the family before the revelation; 2) to understand why the individual does not want the Huntington’s information revealed and 3) a good faith attempt at balancing the competing interests. One individual’s desire for privacy doesn’t trump everything. I imagine the situation arises frequently when one half of committed gay couple has HIV and wants to be a high-profile advocate, while the partner has a sensitive job where knowledge or suspicion that he is ill could cause a problem. Obviously, if disclosure is required by other obligations, that changes the equation as well.

    • I think the easy distinction is that the issue at hand is publishing for all to see and read a sequence that includes what would be protected private medical information for others. One we loosen the boundaries…yes, the issues get grayer.

  4. He then resorts to classic “Everybody does it” rationalization, with a nasty “those non-scientists won’t understand anyway, so why ask them?”…[snipped statement]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!

    You misrepresented the argument. The argument was that it’s stupid to put a consent decree on this just as it’s stupid to put a consent decree on posting a picture of you and your friends smoking up or a comment like “X cheated on me.” There’s no argument that people shouldn’t make sure their behavior is ethical; There’s just no reason this information should be privileged above the existing similar information.

    Parker convenient[ly] 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

    Parker didn’t reduce the ethical argument to that at all. He characterized one thread where the argument was ongoing as reducing to that, but he thought other things were also important. Your partial quote is disingenuous, and, dare I say it, unethical. I should also mention here that you also lied about the flow of the argument making it look a lot stupider than it is.

    It looks like you formed an opinion, and then modified the evidence to better fit that position.

    Yes, you can make a case that Parker is ignoring some ethical concerns or balancing them inappropriately, but it’s not nearly as bad as you’re saying.

    I strongly recommend that anyone interested in this post read the source material.

    • I strongly recommend that as well…always. That said, you’re full of beans.

      1. You don’t mean “consent decree.” that’s a term of art. You mean, and he means. simple informed consent.

      2..If I publish something on Facebook, I HAVE consented to its use, whether I understand that or not. He’s arguing that because a lot of people give up their privacy accidentally by providing de facto consent (which you do when you publish private information) without understanding it, that means it’s OK for scientists to publishSOMEONE ELSES’S private information that HASN’T been waived without getting informed consent!!! Actually, you have it exactly backwards—what Parker said is much worse than how I represented it.

      Not only is he saying that the incidence of a lot of ignorant and unintentional consent to use private information in other settings makes more of the same OK—-it doesn’t!!! —-but he’s making that false argument dishonestly. In the case of Facebook, either the obvious example of what he’s citing or just the one that comes to mind first, nobody is just taking anyone’s private information and publishing it without asking—the owners of the information voluntarily, if mistakenly, make it available and thus grant consent. But in the case of genome testing, the owners didn’t make it available, the familiy member who paid for his own test did—they did NOTHING careless or mistaken. It’s a dishonest and misguided rationalization. [ “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.”]

      3. I did not misrepresent the argument in any way. I simply left out all the reasonable-sounding boiler-plate around the core unethical rationalizations,,,,all of which make the rest irrelevant.. I read both pieces again. The pro-consent piece persists in calling ethical conduct “nice” conduct, which is stupid and wrong; the anti-consent piece essentially relies on 1) I can’t get consent because my family is too dumb to understand it anyway 2) people get screwed out of their private information all the time and seem to survive and 3) who cares? We’re scientists, and we know better.

      It is not just as bad as I said—it’s worse. Now I wish I had been harder on him.

      [Talk to that New Poster guy…I bet he understands this.]

      • This hurts my head. As I go back farther, I find that you misrepresented both more and slightly less than I originally pointed out.

        First, I am partially retracting my comments on your unethical misrepresentations of Parker’s comments, but most of them still stand. You did not put words in his mouth, but you pulled quotes out of context to misinterpret them and changed the order of his argument to make it look sillier than it is.

        There are 2 distinct ideas that you are now discussing:

        1) Should someone get consent from family before publishing their genome.
        2) Should researchers rely on first party consent, or do they need consent of everyone involved before publishing.

        The first question references the pro-consent and anti-consent sides, with Moran and Nielson on the pro side and Razib and Parker on the anti side. We can all agree that Razib is wrong and using bad arguments. I think we can agree the same on Parker’s lone actual argument (usefulness). (Parker is also a horrible writer – I thought he was pro-consent on first read – but that’s neither here nor there.)

        You are referencing Nielson’s comments as the only comments on the pro side. Moran makes it clear the “nice thing to do” is really the ethical thing to do. You ignore this, as it would degrade from your point that ethics is a dangerous topic in the hands of scientists. So on to Nielson, it seems his crime is saying “nice thing to do” when he clearly meant “proper thing to do”. For shame!

        When people who aren’t ethicists talk about ethics, some latitude needs to be given for language. 2 people agree with you and 2 people don’t, so the scientists on all sides are obviously wrong.

        Moving on to the second question. Parker is taking the stand that an individual publishing this information is no different than an individual publishing other information that may relate to others. There’s already information on what disclosure means, and he’s arguing that this is sufficient. Once the information is published, I don’t see any problem with it being used.

        P.S. In reference to your 3, I had previously only said you misrepresented Parker’s position. You responded by saying that you stated Razib’s position correctly (true) and Nielson’s position correctly (untrue).

        • I can’t unravel this. Note that the pro-publishing advocate noted that most agreed with him, which as far as I can glean, is true. I may be reading too much into the use of “nice” for ethics, but I don’t think so. I think it shows a trivializing of ethics in the absence of rules. You might be right; I think people who regard being ethical as being “nice” are missing the point.

  5. I thought I proofread this, but my errors are glaring:

    disinguous => disingenuous

    There should be a comma after “flow of the argument”

    recomment => recommend

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.