Whose rights? Whole-genome screening

Genetic advances have great potential for improving health, but they also raise questions about privacy and who should have access to personal information such as genetic data. Take a look at the made-up scenario below to explore issues that are far from black and white

Techniques for whole-genome sequencing are becoming faster and cheaper by the year. In the future, it could be possible to sequence your genome for a few hundred pounds and find out the conditions you are most at risk of developing. Doctors could also identify harmful mutations that you might pass on to your children or even carry out whole-genome sequencing on embryos.

However, it seems unlikely that we will ever know every gene that contributes to the risk of every disease, and some diseases are a result of our lifestyles as much as our genes. The best way to stay healthy may be to follow age-old advice about diet and exercise, but perhaps knowing you are at high risk for heart disease would give you an added incentive to stay in shape.

Imagine that in the future, whole-genome sequencing allows doctors to produce personalised health profiles based on our DNA, including individual risk ratings for some of the most common diseases. Now read the following and think about how you would answer the questions.

Potential scenarios

“In my family there’s a history of heart disease and stroke. I try to stay healthy, but what if I just have ‘bad genes’?” Luke, 18, student

Q: Should Luke get his genome sequenced? How should he approach dealing with the results?

“I want my children to have the best possible chance to grow up healthy. That’s why I’m getting whole-genome sequencing done on my embryos.” Sarah, 30, solicitor

Q: Should Sarah be given access to her children’s genetic information? What impact could this have on her parenting?

Further reading

About this resource

This resource was first published in ‘Genes, Genomes and Health’ in January 2010 and reviewed and updated in December 2014.

Genetics and genomics, Medicine
Genes, Genomes and Health
Education levels:
16–19, Continuing professional development