Bioethics Blogs

Obama’s Precision Medicine Plan and the New American National Biobank

In the past State of the Union address, Obama announced
his precision medicine initiative involving the creation of a new, national
level biobank
.

Biobanks collect biological samples (e.g., DNA, cells,
tissues, blood) and health and lifestyle information (e.g., disease
information, smoking habits). By collecting it once, biobanks store biosamples
and information such that they can be used as new biomarkers are discovered. As
the samples are shared with others, biobanking research offers a novel research
platform to perform large-scale, epidemiological studies in order to associate genotypic
or biological information with healthand disease. Many nations have made significant
investments into biobanking research creating national level biobanks such as
the U.K. Biobank, which has half a million samples, and the Icelandic biobank
called deCode Genetics.

Obama’s goal is to have at least 1 million American
volunteers
enroll in the biobank which will aim to conduct longitudinal studies
examining genes, health and the environment. Collecting these many samples
may not be so straightforward concluded a panel of experts at a recent workshop
at the National Institutes of Health. Several scientific and logistical issues
were discussed. What types of diseases will be studied? Who will have access to
the data? Who will be recruited? Will samples from other biobanks be
incorporated into the precision medicine initiative? Yet with the many
scientific and logistical issues, there are numerous ethical issues including informed
consent, commercialization, and the return of results that must be given due
consideration.

These ethical issues are quite important because how pan
out might determine if the million volunteer quota will be met or not.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.