The Gray Area
When I started this blog, I promised myself that there were two things I wouldn't write about: my work and my relationship. The former is because anything that's not deadly dull is covered by a non-disclosure agreement, and the latter is because my girlfriend is a wolverine. Last week, however, I took an assignment that raised some unusual ethical issues, and though I am under a strict NDA with respect to details about the client, I feel the need to discuss some of the broader issues here.
In real life, I’m a communications consultant. Most of my clients are information technology companies, and my job is usually to help them express their value proposition to customers in plain English. This work is often banal and occasionally requires coloring a little bit outside the lines, but rarely has much social impact one way or another. However, since the neutron bomb fell on that sector of the economy, I felt it was prudent and necessary to branch out. So lately a growing portion of my client base has been in health care and biotech.
The biotech work can be fascinating and terrifying. Every so often, the media catches on to a particular breakthrough that gets our attention, but the general public would be amazed, and perhaps alarmed, at the extent to which the fevered efforts of scientists in tiny, private labs all over North America and Europe are penetrating the deepest mysteries of life itself on a daily basis. One result of these efforts has been the decoding of the human genome – a massive task that took a roomful of computers many months just a couple of years ago. Now, gene sequencing is, if not exactly routine, certainly a much more well-defined procedure. A fresh bloom of companies has lately appeared to take this technology to the next step and make access to genetic information more widely available.
One of my new clients is engaged in this business. The upside is a huge potential boon to the discovery of new drugs, new therapies for genetic-based conditions (including Alzheimer’s and Parkinson’s Disease, both of whose devastating effects I’ve seen at close range in my own family), and early detection of harmful side-effects of certain treatments. The downside is the most intimate invasion of privacy that it is possible to imagine. Consider, for example, the distortions of the health care payment system if insurers could pre-screen customers based on their genetic predisposition to certain conditions. Or, the Brave New World that might emerge if this technology became available to a state that dictates reproductive policy to its people such as China.
I don’t delude myself that my small, scientifically-irrelevant contribution to one company engaged in this process will make any difference in the long run. But choosing to participate or not is the only way I have of making a statement. I thought long and hard about taking the job, and took the unusual step of airing my concerns to the client in the initial meeting. Their response was thoughtful and well-considered but did not, and could not, answer the fundamental questions. In the end, it was a decision only I could make.
Over the weekend, I decided that any opportunity to contribute to an effort that might reduce the suffering of people with horrible, incurable conditions like MS, Lupus, Lou Gerhig’s Disease, Alzheimer’s and Parkinson’s was worth the downside risks. In a sense, I am taking a leap of faith that our species is up to the task of managing the social policy, and that we will deal responsibly with the consequences of these technological innovations. Sometime in the future, when my genome is available for download on the Internet along with my credit card number, I may regret my choice, but if that day comes, it’s more than one person or one company to blame.
Yesterday morning, I attended the first general session with the client and was surprised to discover a new section on the architecture diagram of the proposed Website: a section on the home page specifically designed to discuss and articulate the company’s commitment on ethical issues. It’s not much, but it’s a start.
9:03:54 AM 
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