One of the most important human rights issues of the 21st century may be the right to have access to information contained in our own bodies. We are generally acknowledged to own any ideas we express that can be recorded in tangible form (copyright). However, we do not seem to have clear rights of ownership to more tangible products of our bodies. Body pieces that are removed during medical procedures, information gained during medical testing and information contained in our DNA, seem to fall into a category of information from which some paternalistically believe they must protect us.
After four decades as a librarian I have the professional ethic that information is power and that my role as a professional is to help clients find the information they need to make informed decisions about all aspects of their lives. This is a somewhat different paradigm than the prevailing one in the medical arena between physicians and their patients.
Scientists and physicians want to use health information for their own purposes but many are reluctant to share it with the donors of that information. Many researchers are afraid that we might object to their use of this data which they believe they can exploit for the benefit of society. Physicians don’t appreciate the value of their patients having information on medical issues if the physicians do not have the knowledge to “fix” the problems. Both of these positions are short-sighted and paternalistic.
I had been developing my own opinion on these topics over the last few years as I pondered my own chances of developing Alzheimer’s. My mother was afflicted by late onset dementia which may have been a form of Alzheimer’s. The prevailing view of the medical community seems to be that since they cannot successfully reverse or arrest such a disease, there is no benefit in me finding out whether or not I might have an elevated risk of developing it. In fact, they believe that such knowledge would unduly raise my anxiety level and lead to depression. A few recent studies suggest that any such anxiety and depression would be short lived and that those who do not test positive for increased risk will receive a positive attitude adjustment from the results.
Even if the medical community is not yet equipped to successfully treat me for such diseases, I can use such diagnostic knowledge to make informed decisions about my life and the environment in which I wish to live it. For example, if I believe myself to be at increased risk of Alzheimer’s, I may wish to choose to live in an extended care retirement community of my own choosing rather to inflict the burden of such a choice on my children with the potential guilt this may afflict on them.
With those concerns in mind, I have been tested for one gene marker that is thought to be associated with Alzheimer’s. I fully understand that this is only one indicator and that by itself it does not control my fate. I was relieved to find that on the basis of this one indicator, my likelihood of developing Alzheimer’s is only about 3% while that of the general population is about 7%. At the same time my wife tested along with me and discovered that she is at an increased risk of about 14% even she has no family history of Alzheimer’s. Her result does not seal her fate. She still has, based on this one indicator, only a one in seven chance of developing this disease. However, based on this knowledge, we can make decisions about our lives that have little to do with the ability or inability of the medical profession to “fix” Alzheimer’s.
Individual citizens need to have complete access to any medical test conducted on them and to be able to control information coming from within their bodies. For those of you who may have an interest in some of the ethical issues involved, I would recommend the thought provoking book The Immortal Life of Henrietta Lacks by Rebecca Skloot about which I will have more to say in a future blog post.