What are the potential risks of personal sequencing?
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, and facial structure, and also one’s susceptibility to genetic diseases. This will likely have enormous implications for the criminal justice system, which is already pushing to increase the availability of DNA samples from the population. In addition, some fear that information about your probable health care needs may affect your ability to find employment or insurance. Should the sequences of individuals be accessible to law enforcement agencies and/or the government, or does such availability cross the line of acceptable privacy rights? What about employers and health insurers? Is it possible to morph into an open society where privacy has little meaning, or is some level of privacy required to prevent genetic discrimination?
Another example of these issues is the procedure known as preimplantation genetic diagnosis (PGD). Embryos, created via in vitro fertilization (IVF), can now be tested for a number of genetic traits, and the results can help prospective parents choose which embryo(s) to implant in a woman’s uterus. Thousands of the children in the US have already been born as a result of this process. Sequencing technology could be performed on an embryo just as easily as it could be on an adult human, giving prospective parents an enormous amount of information. This information could be a comfort and a relief in some situations but a source of worry for them and their child in others. How much of a child’s genetic makeup should be a parent’s choice? Will children of the future agree with their parents’ decisions? How might these decisions alter relationships in a family?
Clearly the scope of these issues is enormous, and one can argue that the potential for harm reaches beyond the ability of our societal structure to guarantee protection of individual rights. As such, it would be wise to step back and examine the big picture before we embark on our journey toward a genomic future: Who has the most to gain and the most to lose? Who bears the most risk? Where do we draw the line? And who exactly gets to draw that line, and with what authority? Genome sequencing has great potential to improve health create new treatments and cures for disease – how can we make sure those possibilities can be realized and minimize the risk at the same time?