What are your views on what happens to your genomic information?

A screengrab from one of the videos

We’re closer than ever to harnessing whole genome sequencing for everyday medical use. But what would you want to know – and what would you not? Anna Middleton invites you to take part in a new study looking to understand the ethical implications. 

Public engagement about genomics is de rigueur at the moment. A whole genome test on a single saliva sample can tell a person about their genetic risks for hundreds of conditions all in one go, ranging from whether they are predisposed to developing Alzheimer’s disease or diabetes through to whether they are sensitive to certain antibiotics or whether their children might be at risk from inheriting something specific.

The anticipation is that genomics will soon become integrated into our lives in ways we have never experienced before. We therefore need to know what is possible and what we have to gain.

The Human Genomics Strategy Group reported recently on what the NHS needs to do to embrace genomic technologies. Meanwhile, genomic researchers, used to working with anonymous samples, are facing increasing pressure to share their findings with the volunteers who provided their samples.

There is now an urgent need to understand what the public and professionals want in terms of feedback of genome data. With this in mind, we at the Wellcome Trust Sanger Institute are asking people: what would you want to know?

We’re conducting an international study to explore some of the ethical implications of whole genome evaluation, in what we hope will be the largest survey of its kind. The aim is to provide robust empirical data to support policy decisions about the sharing of data from genomic studies. We hope that this will be useful in both clinical and research settings.

Example survey questions

We use an online questionnaire containing 10 short films describing the ethical issues surrounding feedback of genomic information. Participants then tick boxes in a series of brief questions. It takes about 20 minutes and anyone can participate, be they research participants, genomic researchers, health professionals or a member of the general public. You need have no prior knowledge about genomics, so if you’re interested, you can find out more and take part at: www.genomethics.org

Anna Middleton

Dr Anna Middleton is an ethics researcher and a registered genetic counsellor at the Wellcome Trust Sanger Institute.