Bioethics concepts and applications

Genetic Privacy

Can We or Should We Ensure Genetic Privacy?

Genetic science has come so far as to be able to positively identify a person based on a single artifact of DNA. As Angrist puts it, "One can imagine law enforcement salivating at the prospect of turning a bloodstain into a name and address." Some might ask what the problem might be in assisting law enforcement with arrests, greatly facilitating the carriage of justice. The answer is that DNA evidence used in forensics can be problematic. Evidence can be planted too easily at the scene of the crime, made to appear incontrovertible. In some cases, the presence of DNA might not link an individual to a crime but instead to victimhood. Moreover, "wrongful convictions can result from human error or malfeasance," and there can be data entry errors too (the Washington Times).

The potentials for misuse in forensics are broad. There are also potential misuses of DNA evidence in adoption cases, where the biological parents have the right to remain anonymous but technically cannot because of genetic science. The use of DNA in job testing can cause rampant discrimination, not necessarily on the basis of visible markers of difference such as race, but invisible markers such as psychological traits. If DNA evidence is compiled in massive databases, even when it is not used to identify its origin, that information can be bought and sold on the free market. If a scientist in a country with lax laws related to human cloning discovers a means to clone a human being based on a personal genome sequence, then that raises further ethical problems. An editorial published in Nature magazine reveals the "vulnerabilities in the security of public databases that contain genetic data." There are a host of reasons why we should ensure genetic privacy.

The second part of the question, whether we can ensure genetic privacy, is another matter. According to Angrist, "the privacy provisions of the U.S. Health Insurance Portability and Accountability Act of 1996 (HIPAA) were revised in 2003 to create a category of protected health information that can be used or disclosed only under certain conditions." This category of identifiers, is however, weak. There are apparently a list of indicators such as name and address that have to be removed from the database in order to use the DNA evidence without notifying the person. When these markers are removed, the evidence is considered public. Yet there are potentials for those markers to resurface and privacy can never be ensured. Even though Angrist is in favor of a public pool of DNA evidence for the lofty goals of science, he agrees, "de-identification is increasingly difficult." It is becoming hard to disconnect names, dates, and places from the hemoglobin and RNA. Science appreciates access to DNA because it can link certain traits with others and thereby advance scientific knowledge.