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.