Return of results

Return of results is a concept in research ethics which describes the extent of the duty of a researcher to reveal and explain the results of research to a research participant. Return of results is a concept in research ethics which describes the extent of the duty of a researcher to reveal and explain the results of research to a research participant. Return of results is particularly discussed in the field of biobanks, where a typical case would be that many members of a community donate biobank specimens for medical research. In the course of the research, especially in human genomics research, scientists may discover personal health information which could influence the behavior of specimen donors if they had this information. For different cases, there are arguments for and against revealing study information to participants and in many cases the morally correct choice is not self-evident. The following example shows some possible outcomes of trying to fulfill the return of results in genomic research. A healthy person donates a biological specimen and agrees to have that specimen and associated data put into a genome-wide association study. The goal of the study would be something unrelated to the donor's identified interests, and may be, for example, to build the base of fundamental research or to study rare disease. The sample is stored for years. Later a researcher gets access to data from the sample, and this data has been de-identified so that the researcher can use the data without invading the research participant's privacy. This researcher finds that the donor's specimen displays biomarkers which indicate that the person is at risk for developing a genetic disease. If an individual's personal physician had this genetic information, the standard of care might be to take action. One outcome of this scenario could be that the researcher contacts the specimen donor, gives this information, and the donor is more informed and happy for this.