Sense vs. Senselessness

Sense vs. Senselessness

by Guest Blogger,

Dr. Tyler Kokjohn

 

double helixThe Connecticut state medical examiner has requested that the remains of a mass murderer undergo comprehensive genetic analysis. In principle, seeking all available clues to the root causes underlying horrific events such as the recent school shootings are justified and important. However, the way in which this study is being conducted is a BAD IDEA.

Everyone wants to understand what went wrong and prevent similar future tragedies. Unfortunately, the data acquired from this genetic analysis cannot be generalized into useful information. It’s one case. We are talking about intuiting complex behaviors from an equally complicated genome that impacts a poorly understood organ, the human brain. At this point we have no idea what we are looking for or even if there is something buried in the genome that would reveal propensity to commit mass murder or any crime. Perhaps this is a good point to ponder that we have only the vaguest ideas as to what about 80% of the genome sequences actually do.

But making sense of it all is made even more difficult by a most inconvenient fact – genes are not destiny. We can now look at them and attempt to discern risks and divine probabilities, but the final outcome is the result of an intricate interplay between genetic potential and the environment. I offer this example to illustrate what scientists are up against. Dr. Steven Pinker, a participant in the Personal Genome Project, volunteered to place his complete genome sequence on the internet for all to see and describes some of his experiences in a New York Times article http://www.nytimes.com/2009/01/11/magazine/11Genomet.html?pagewanted=all&_r=0. Before you read the text, have a look at the photograph of Dr. Pinker. Then judge the accuracy of predictions based strictly on his genetic information that he should have red hair and pattern baldness. Let me remind you these predictions were for simple traits and not anything remotely as complex as attempting to forecast Dr. Pinker’s behavior. The science is simply not at that level of sophistication yet and won’t be for a long time, if ever.

Maybe a genetic malfunction(s) does lead to mass murder. How are we to know if we do not search? I agree a systematic search should be conducted, just not the way the Connecticut authorities are doing things today. Their effort is very public and it is not clear how the data will be managed and used. Will it be a one-off public relations effort born of fear and frustration or the inception of a systematic and scientifically valid program to examine criminal behavior? Will the data be published? If not, could someone sue to force release of the information since the work was financed with tax dollars? What decisions/actions could a study of precisely one subject justify? Research with human subjects requires appropriate protections including confidentiality and it is important to consider that the data from this investigation impacts more than only the late killer. If the genetic information becomes part of the public record, the fact is someone could deduce with good accuracy certain things about relatives who have done nothing wrong. For example, the possible possession of a gene(s) like APOE4 which suggests elevated risk for early development of Alzheimer’s disease. Think again of Dr. Pinker, who has decided not to be informed of his APOE gene status. While he remains deliberately unaware of his status, if he ever seeks to purchase long-term care insurance the genetic information in the public record may be invaluable to an insurer seeking to sell, or possibly decline to sell, Dr. Pinker a policy. In the event something like this comes to pass, at least Dr. Pinker will understand that he weighed the situation and voluntarily revealed his genomic sequence to the world.

Everyone wants effective answers to a tragic question as soon as possible. Depending on how the Connecticut effort plays out, public genetic data may be linkable to specific, uninvolved persons. This neatly illustrates why researchers take such pains to safeguard the confidentiality and full privacy of participants. Important and beneficial studies involving the most sensitive of information may be conducted in a completely ethical fashion. While it is possible to continue down the ‘what if’ pathway to fret over several unpleasant possibilities, everything hinges on the future decisions of Connecticut authorities. May they be both wise and fair.

Lest you feel all this has little bearing on you, I suggest you think again. This revolution will reach your doorstep shortly. Because they will be cheap to acquire and potentially so valuable, comprehensive genetic profiles may become routine medical practice. Who will get to see and use that data in addition to you and your physician? Recognizing that nothing can be done to alter a person’s genetic constitution (today), the U.S. Congress passed the Genetic Information Nondiscrimination Act a few years ago as a proactive protective measure. To my knowledge it has not been tested in court. It may also have a few loopholes. We appear to be heading into situations that might challenge our long cherished principles of personal privacy and autonomy. Your privacy and autonomy.

Here is my suggestion to the authorities for the future. Before embarking on an emotionally charged, publically announced scientific exploration, check with the scientists first. And let them run the show. I am not saying we can’t examine difficult questions, but I am saying that may be accomplished in a way that is scientifically valid, ethical and fair to all concerned. Succumbing to the well intentioned desire to get some answers – any answers – now without thinking through all the consequences is a BAD IDEA.

___________________
Steven Pinker. My Genome, My Self. New York Times, 11 January 2009. http://www.nytimes.com/2009/01/11/magazine/11Genome-t.html?pagewanted=all&_r=0)

No Easy Answer. Nature, 10 January 2013.
http://www.nature.com/news/no-easy-answer-1.12157

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Comments
One Response to “Sense vs. Senselessness”
  1. Jack Brewer says:

    Thanks for the article, Doctor. You bring up relevant points. I am reminded of privacy issues related to data mining via chips placed in various consumer products. One of the challenges, as you suggested, is that it is so difficult to curb the tide once it is set in motion.

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