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.
