It’s an interesting take on the ethics of participating in clinical trials. People take part in this kind of research to aid the development of new drugs, or testing for new diseases, and also, it has to be said, for the money.
Such research also produces data. Some of this data relates to the people who take part in the studies. With research into genetic diseases, it seems that most people who take part want to know the outcomes. In one recent review of what participants think, which took account of research participants from 75 countries, almost all indicated that they’d like to know if they had either a preventable or treatable genetic diseases. Reviewing the study, The Scientist reports that the number altered a little when it came to life-threatening diseases that were not preventable. Here the proportion of respondents who wanted to know dropped to about 70 percent. This means that more people wish to know if they have a curable disease than an incurable one; although the majority seem to want to know either way.
Commenting on this, the researcher who undertook the analysis, Anna Middleton of the Wellcome Trust Sanger Institute, is quoted as saying: “The advent of fast, efficient genetic sequencing has transformed medical research over the past decade and it’s set to revolutionise clinical care in the future. Policy surrounding the use of genetic data in research and clinical settings must be directed by the views and experiences of the public, patients, clinicians, genetic health professions and genomic researchers. This study represents a first step in informing people of the issues and gathering their responses.”
The outcome of the survey and its analysis has been published in European Journal of Human Genetics. The research paper is titled “Attitudes of nearly 7000 health professionals, genomic researchers and publics toward the return of incidental results from sequencing research.”
