Personal genome sequencing is
uncharted waters in our society. The benefits and implications of
sequencing are likely to be connected, complex, and largely unknowable until
years have passed and the consequences are examined across several generations.
However, thinking through the issues surrounding personal genomics now, rather
than later, may help to avoid potential pitfalls and ensure that the good
outweighs the bad.
Health benefits
The
benefits of sequencing may be mostly in the medical arena. In the long term,
sequencing of many individuals could provide new information on the genetic
basis of poorly understood diseases, with the potential to provide new
therapies. However, there may also be immediate benefits based on our current
understanding of genetics and health. Knowledge of elevated risks for known
diseases could allow you to make proactive decisions about your health;
visiting the doctor for more frequent check ups or screenings, choosing one
type of prescription drug over another based on your metabolism, altering your diet
or exercise plan, informing reproductive decisions, or making certain kinds of
arrangements for your future medical care are all ways that you might use the
information that you learn from your sequence. This individualized avenue of
health care is often referred to as “personalized medicine.”
Social connections
In
addition to medical benefits, some believe that the advent of widespread
sequencing could foster new connections among different people or groups. For
example, people with shared genetic variants and mutations may wish to contact
one another in order to discuss their common experiences, just as people living
with debilitating diseases do currently.
The possibility of benefits also
comes with potential for harm, unintended consequences, and the altering of how
we think about a number of cultural, personal, and biological issues.
Personal sequencing will likely
impact our concept of personal privacy, as the technology may allow for the
possible exposure our unique “code” that we leave behind on every surface we
touch. In particular, even if databases storing our personal sequences are
protected from the public eye, the DNA that one may discard on a used coffee
cup could eventually be used to identify an individual’s physical
characteristics, including race, height, facial structure, and one’s
susceptibility to genetic diseases. This will likely have enormous implications
for the criminal justice system, which generally seeks to increase the availability
of DNA samples from the population.
Fear of genetic discrimination
In
addition, there is a fear that information about your probable health care
needs may affect your ability to find employment or insurance. The passage of
the Genetic Information
Nondiscrimination Act (GINA) in 2008, which forbids the use of
genetic information in employment and the ability to obtain and set fees for
health insurance, is a major milestone in the United States.
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