Should Research Subjects Be Given Their Genetic Test Results?

Should research subjects be given their genetic test results? A paper recently published in The American Journal of Human Genetics considered the ethical issues related to returning genetic testing results to people who have participated in research experiments.

There is a growing number of research projects that use next-generation DNA sequencing to determine the sequence of the DNA nucleotides (ATCGs) in a person’s entire genome. Next-generation sequencing is a new technique that allows DNA sequencing information for an individual to be gathered very quickly. Previously, only certain chosen areas of a person’s genome would be sequenced for a research study due to time and efficiency constraints. Now, however, with the efficiency of next-generation sequencing, it is cost- and time-effective to sequence everything, meaning all the DNA of that person.

The ethical dilemma that results from this is the fact that the research scientist now has information about all of the research subject’s genes, and there may be something in their genetic make-up that would be medically significant for that person. The question is, since the research scientist may now have...