Last year, President
Obama began a major biomedical research initiative. This initiative aims to collect genetic
information from one million American volunteers. Its intention is to enable scientists to
further evaluate and possibly develop treatments and drugs tailored to
individuals specifically. Although this
is a step towards personalization, precision, and innovation to possible early
detection, patient diagnosis, and treatment tailored to that individual. It has also raised
concerns in regards to patient’s rights to genetic discoveries from their
information used while volunteering for these experiments.
The question here as
stated in this article published in the New York times “President Weighs In onData From Genes” is “understanding who owns the data”? While many scientists and their sponsors
would consider the findings and details to the experiment their own, many
believe that volunteers should have a right to their genetic information being
used. It is believed that the findings
made using the genetic information should also be a right to the individual as
a part of their patients right to their medical records. Some even proposed a right to partnership
should be given to the individual as it is their genetic information that led
to the finding. However, there would be
no experiment nor findings without these volunteers or their genetics
information.
At the same time,
one can argue that if the individual who is willing to volunteer, fully
understands their position and had agreed to the terms within volunteering
their services prior to proceeding. I would
assume certain consent would have been given and if one disagrees with not
having the option of right to their genetic information; they would
decline. I think that allowing the
individual to have a right to their genetic information is reasonable and
credit for their source. But credit to the findings or partnership maybe a little
over reached. As the patient has
no hand in the actual work or process to the findings, if any at all were
produced.
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