The validity of informed consent with regard to human genetic sequencing

Abstract

Modern societies manage an ever increasing amount of data. By mining
these data-sets, it is possible to gain understanding of problems. Through a
process of informed consent companies have been able to sequence the genome
of large populations. Providing insight to the consumer about their family
lineage and possible future risks that they could face. As a consequence of
providing such services to consumers, companies are in the position where
they can monetize a database of information hat they possess. The primary
issue that will be addressed is how private genetic data should be handled
correctly. As without clear ethical guidance corporations will (un)willingly
abuse trust. The result of aiming to maximize asset value can be unethical
conduct such as selling the data to third party insurance companies. The
apparent need to process larger quantities of data in order to acquire new
information to fill our knowledge gaps is a trade off between privacy and
anonymity of the individuals within society. Creating an ethical conundrum
for companies trying to profit. This research makes a contribution to prove
that certain actions when sequencing or using genetic information infringe
on privacy and are not morally permissible. Providing greater clarity when
trying to decide whether a use case of personal data is ethically permissible.
By reviewing modern literature that describes the ethical implications of
informed consent and human genome sequencing the research will identify
key areas requiring further work to develop the ethics of technology in a way
that enables innovation whilst keeping society safe.