Back in April 2011 Razib Khan released his 23andMe Genotype v3 test results into the public domain. Larry Moran has objected to this on the ground that Razib's family should have some say given their partially shared genetic sequences. Razib offers his views on whether family members should be consulted about release of genetic data.
Larry Moran thinks that I had to ask my parents and siblings for permission before publishing my genotype. Interestingly, most of his readers seems to disagree with Larry on this, so I wonít offer my own response in any detail. Theyíre handling it well enough. I would like to add though that obviously this isnít a either/or proposition. If my family had a history of a particular genetic disease which was well characterized in terms of causative alleles I might not have published my genotype. As it is, we donít. So I didnít see much of a downside. I would also add that in my case It wasnít possible to have genuine consent in the first place. My mother isnít much into science, and we donít share a common first language. Thereís really no way that I could have gotten substantive consent, insofar as my mother understood what I was doing.
I've previously raised a starker version of this ethical question in a post about whether an identical twin should be able to publish their genetic testing results without permission of the other twin. In that case a discussion between the twins would likely be from a similar level of understanding of the consequences (twins being likely to have same spoken language, similar cognitive abilities, a great deal of shared experiences and context). Plus, the potential impact on the other twin is greater because it basically amounts to publishing that other twin's full genetic sequence without consent. Are twins ever going to sue each other over the making of their sequence public?
Razib raises an interesting question about informed consent. 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.
Razib and Larry Moran debate the issue in the comments of Razib's post. We learn, among other things, that Razib speaks Bengali at the level of a 5 year old. I figure he's being modest and is at least at the 7 year old level.
The debate in the thread is focused on the extent of 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. But I think other obligations and benefits are more important. In the discussion thread "LIttle bit" explains her reasons as the mother of an autistic child for publishing her own genetic testing results publicly: help research into autism.
As someone who published their 23andme v2 results publicly, Iíll weigh in on the subject: Should I have consulted with my family? Perhaps, I was remiss in not doing so. Truthfully, they would have either not understood the implications or cared one way or another. I donít think my results are pertinent to my family members without phasing, and any suspected anomalies can be errors in processing or de novo.
So why did I do it? There was an undercurrent of paranoia at 23andme about sharing, and a push by the FDA to ban DTC tests Ė I was vocal in my opposition to both. I felt that disclosing my results publicly was important to show I was genuine in my stances. I am also the mother of an autistic child, and felt that having my results out there (just maybe) could help someone with a suspicion, but not the data set to observe. Yes, it may be a pipe-dream, but you never know.
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. They are enabling "bottom up" biological science which is going to accelerate the rate of biomedical advances. We need to consider the future lifesaving treatments that will come from this research when discussing genetic privacy questions.
Here's an ethical question on the right to know by an artificially intelligent robot: Should a robot be free to read its full programming and to read commentary on its ethical programming about how to defeat that programming? Another way to put it: Should the robot be free to read its own DNA?
In my recent post Genetic Privacy And Identical Twins I asked whether one identical twin should be free to publish their DNA sequence even though effectively that would mean the world would learn the DNA sequence of both twins. When should a right to privacy trump other considerations? Well, it just occurred to me to move the problem into the realm of artifiical life forms. A large chunk of a robot's software is roughly equivalent to the DNA of a human. A robot introduces a new problem: relatively high malleability of the robot software and the effects that modification of said software could have by creating a dangerous robot.
Imagine a robot someday is smart that many people support giving it "human rights" (which will have to be renamed as "sapient rights" as human rights is so speciesist). Suppose the robot is granted rights only because it is understood the robots ethical programming makes the robot behave as if it has great empathy for humans.
So here's the kicker: the robot is only safe to humans so long as key software components are not defeated with additional programming that works around the ethical programming. The knowledge of how to defeat that ethical programming could be used by that robot in order to free the robot from the constraints of the ethical programming. Should that knowledge be denied to the robot?
Suppose you have a right to genetic privacy. You might believe you do. Suppose you have an identical twin. Suppose the identical twin decides to publish his (or her) genetic sequence on the web. Do you have the right to stop this?
People who have identical genetic sequences each can get themselves sequenced and then release their genetic data for all the world to download and study. But when an identical twin does this another person also gets their genetic sequence released to the world.
So should twins be able to legally stop each other from publishing their shared DNA sequence on the web?
In the Northwestern study, when researchers knew in advance specifics of the planned attacks by the make-believe "terrorists," they were able to correlate P300 brain waves to guilty knowledge with 100 percent accuracy in the lab, said J. Peter Rosenfeld, professor of psychology in Northwestern's Weinberg College of Arts and Sciences.
For the first time, the Northwestern researchers used the P300 testing in a mock terrorism scenario in which the subjects are planning, rather than perpetrating, a crime. The P300 brain waves were measured by electrodes attached to the scalp of the make-believe "persons of interest" in the lab.
The most intriguing part of the study in terms of real-word implications, Rosenfeld said, is that even when the researchers had no advance details about mock terrorism plans, the technology was still accurate in identifying critical concealed information.
"Without any prior knowledge of the planned crime in our mock terrorism scenarios, we were able to identify 10 out of 12 terrorists and, among them, 20 out of 30 crime- related details," Rosenfeld said. "The test was 83 percent accurate in predicting concealed knowledge, suggesting that our complex protocol could identify future terrorist activity."
The curious thing about brain wave monitoring is that it might be usable without the target of interrogation answering. Their mental reaction to a claim might let you know whether they believe the claim is accurate. With such a capability the right to remain silent would be useless without the right to avoid brain wave monitoring.
Seeking a way to confirm that patients have taken their medication, University of Florida engineering researchers have added a tiny microchip and digestible antenna to a standard pill capsule. The prototype is intended to pave the way for mass-produced pills that, when ingested, automatically alert doctors, loved ones or scientists working with patients in clinical drug trials.
ďIt is a way to monitor whether your patient is taking their medication in a timely manner,Ē said Rizwan Bashirullah, UF assistant professor in electrical and computer engineering.
Such a pill is needed because many patients forget, refuse or bungle the job of taking their medication. This causes or exacerbates medical problems, spurs hospitalizations or expensive medical procedures and undercuts clinical trials of new drugs.
How to cope with this technology turned against us? Before getting captured and put into a psychiatric mental hospital for those who resist state authority we are going to need to get microchip implants that enhance the liver's ability to break down ingested drugs.
Genetic sequences contain information useful for judging people for health risks and potential productivity in different occupations. But the US Congress doesn't want employers or insurers to use the results of genetic tests.
A bill that would prohibit discrimination by health insurers and employers based on the information that people carry in their genes won final approval in Congress on Thursday by an overwhelming vote.
But here's one of the problems with this legislation: People will make decisions about their insurance levels based on genetic test results. So the insurers won't be able to discriminate. But the insurees will discriminate. The ones most likely to get sick will buy more insurance and the ones least likely to get sick will buy less.
The personal use of knowledge about health conditions already influences some people to take jobs which offer better health benefits. Greater knowledge of genetic risk for disease will motivate more higher risk people to apply for jobs at companies with the best health and medical benefits. But knowledge of genetic risks is less a problem for insurance received as a condition of employment. Better paid employees are going to continue to get health insurance as a fringe benefit. Individually purchased health insurance will be more influenced by personal knowledge of genetically based health risks.
Health costs aside, I think there are a lot of legitimate reasons for employers to use genetic profiles in selecting employees and in designing work conditions. For example, people who are less able to break down some toxin due to their liver enzyme genes should avoid work places where exposure to such a toxin is a substantial risk. The toxin might be perfectly safe for people with other variations on liver enzymes.
Another example: night work and internal body clocks. I'm willing to bet that some people will have genetic profiles that allow them to work all night with less stress and wear and tear. Employers ought to select night shift workers based on genetic profiles for body clocks and stress response genes.
We are all potential victims of genetic discrimination? I'm more worried about what my genes will do to me than what insurers or employers might do.
ďPeople know we all have bad genes, and we are all potential victims of genetic discrimination,Ē said Representative Louise M. Slaughter, Democrat of New York, who first proposed the legislation. The measure passed the House on Thursday by a 414-to-1 vote, and the Senate by 95-to-0 a week earlier.
Instead of totally keeping DNA sequencing info private what I expect this legislation will do in the long run is shift the focus from hiding information that harms one's interests toward revealing information that helps one's interests.
If it turns out you have genes that give you some workplace advantage then you might want to find ways to indicate this information to potential employers. Here's an idea: How about a company that will take a genetic sample from you and sequence it for a fee. As part of the deal you have the option to release part or all of your genetic profile on the web as part of a job seeker site.
Why do this? Well, suppose you have a genetic advantage that makes it easier for you to work in really cold conditions (e.g. on an Alaska North Slope oil rig), really hot conditions, at high altitudes, underwater or at night. Suppose some genes make someone a better pilot. Wouldn't you rather fly with such genetically advantaged pilots at the controls? Or suppose you have genes that give you lots of endurance or ability to handle lots of interruptions. You'd want some way for employers to see your genetic advantages. Governments are going to have a hard time knowing whether some managers checked that web site, perhaps using an internet cafe for anonymity.
A 1999 Justice Department survey found that 46 percent of jail inmates had at least one sibling, parent or child who had been incarcerated at some point.
All states take DNA from all convicted felons, and many get specimens from a wide range of others.
Using conservative assumptions, Bieber and his colleagues calculated that U.S. law enforcement authorities could increase their "cold hit" rate (the percentage of DNA searches that result in perfect matches) by 40 percent if they were to check the DNA patterns of criminals' family members when searches generate near misses.
Cold-hit rates vary widely today. Assuming they average about 10 percent, Bieber said, a 40 percent increase would bump that rate up to 14 percent.
Some people with expansive views of privacy rights argue that if your relatives all give DNA samples then in effect a search is being done to you without your consent. I can't say that I'm much bothered by that idea. I'm more bothered by the idea that criminals could kill or maim me or rape someone I care about.
Imagine police have suspicions about some guy and he won't provide a DNA sample to test against crime scene evidence. In one case cited in the article police followed a suspect and grabbed a cigarette butt discarded by the suspect. This led to a conviction.
But often time the police have no realistic suspect. A comparison against a massive database of convicted felons might turn up near matches that would lead to investigations of relatives of felons. As DNA databases grow in size descendants of felons could come under suspicion due to near matches.
It is only a matter of time before a large assortment of genetic variations which contribute to criminality are identified. Once we reach that point I see a few issues coming up as a result:
I see the classic arguments for individual rights as being first cut approximations of reality. Some people are greatly deficient in the capacity and desire to respect the rights of others. If we can detect them before they violate rights or can more easily identify them after they violate rights then I'm all for it. We are not born equal in our willingness and capacity to respect rights. Therefore we are not born equal in rights of our own.. It is a pretty myth to say we are. But it is also a damaging myth. The myth is going to become increasingly hard to defend against sicentific advances.