The DNA Dilemma

The current Time Magazine cover story “The DNA Dilemma: A Test That Could Change Your Life” by Bonnie Rochman raises several important questions. Each of us will have to answer them for ourselves. It is well worth reading. I have submitted the following letter to the editor for possible publication:

Bonnie Rochman (“The DNA Dilemma”, Dec 24^th) is correct that “knowledge is power.” Currently, the greatest impediment to unleashing the knowledge within our genomes to improve our medical care is the ignorance or indifference of the medical community about how to harness this potential. A vast educational program is needed. Physicians see themselves as gatekeepers to this information and only value it if they have a fix that can be applied to the problems so identified.

Some patients will choose to know their predispositions and some will not. Some of us have been seeking them out with tests like 23andMe and then taking the results to our physicians. All these options should be open in the land of the free.

Information encoded within our DNA is owned by us—not by the medical establishment. It should be made accessible to those of us who want to be partners in our own health care decisions. It is not something to be doled out paternalistically when the medical profession is ready to offer us a fix for a defect. This information is valuable to us in making other life decisions. This is even more essential in guiding our decisions when current medical practice has no current fix to offer.

Patients and physicians should be partners in discussing how this information should be applied. It is not something from which the medical profession is ethically bound to protect us. By sharing the information and the responsibility for its use, all are empowered.

There are always questions about appropriate use when any new technology is introduced. The technology always develops faster than our ability to foresee or react to its impact on society. For more than a dozen years I taught "Ethics in the Information Age". Although it was focused on the ethical dilemmas library workers and web designers face on the job when dealing with clients and client information, the basic themes apply here. Reduced to the simplest possible terms there are four competing "Rights":

The right to know;

The right to privacy;

The right to own and benefit from intellectual property; and

The right to protect some or all of us in our society.

It's a zero sum game. One of those rights cannot be advanced without another retreating. It is clearly a case where one answer does not fit all people or all situations. Read the article. Discuss it with your family and physician. Comment on this blog and in other forums.

Genome Sequencing's Affordable, and Frightful, Future - Businessweek

Will you be able to sequence your entire genome for less than $1,000 by 2017? Many experts believe this is realistic. The story linked below previews what we will find out when this becomes reality.

Genome Sequencing's Affordable, and Frightful, Future - Businessweek


New genetic discoveries are being made every week. Those discoveries will continue and the pace will accelerate. The appropriate use of this genetic information will become an increasingly important issue.

1. Will medical professionals be retrained to understand and use this information in personal treatment plans which will become possible when we know our personal disease risks and our personal reactions to specific drugs?

2. Who will have the right to request these tests?

3. Who will have access to the resulting information?

4. Who will store and possibly profit from the rapid growth of warehousing of genetic materials?

5. Who will benefit from the vast amount of intellectual property emerging from the digital databases built from individual genetic data?

The next couple of decades will be fascinating as our society wrestles with these and related questions.