Genetic Testing - How Much Do We Really Want to Know? [Survey]
Initiatives to sequence 100,000 individual genomes in the UK and to develop a DNA study of one million Americans will create a vast genetic dataset. There is pressure to return incidental, but relevant, findings to participants. Despite this aim being complicated by the sheer volume of information and uncertainties over its true meaning, people wish to know their results.
Gen Re surveyed attitudes to genetic testing, obtaining anonymous responses from 134 insurance employees and their personal contacts in the UK and Ireland. Around 45% of responses were from people working outside the life insurance industry or not having medical training. A little over 85% said they would be prepared to undergo testing (a small subset with a medical background revealed greater reluctance).
Half of those saying they would have the test felt it would provide them a better understanding of any health risks they might face, mostly to allow early medical intervention if required. In the under age 35 group, 15% want to understand risks they might pass along to their children. One in four people age 35 and over would have a test if there were a “good reason”, such as family history or existing illness, while few under-35s qualified their answers in this way.
Not quite half (44%) indicated they would pay for a test, most of whom thought that 50-250 GBP represented a fair price. In the overall group, 37% would be interested only if testing was free of charge, while a further 6% would be tested only if they were offered some form of incentive.
Those who didn’t want to be tested were reluctant about being burdened with knowledge about diseases about which they believe they could do nothing; they felt a test was unlikely to be useful in the absence of a clinical problem or history of genetic conditions in their relatives. Just one person cited data privacy concerns.
We extrapolate from our sample that most people are open to being tested for genetic conditions, believing that it will help them manage their health better.
The conclusion is supported by the results of a sizeable new study by the Wellcome Trust Sanger Institute. It polled the views of almost 7,000 people in 75 countries, two-thirds of whom have no medical background, and 98% of whom said they would want to be told about indicators of a serious preventable or treatable disease found using their genomic data.
Some caution is required, however. Finding indicators for disease in genetic code doesn’t guarantee disease will develop. As today’s genetic markers don’t identify highly penetrable disorders with 100% sensitivity, they are no more helpful than standard clinical approaches.
It remains unclear what genomic science can contribute to our understanding of common hereditary factors for heart disease, cancer or diabetes. Much of the information in personal genetic code is uninterpretable and of uncertain clinical significance based on current knowledge.
This is likely to change. Genomic information will, in future, be routine in healthcare and what is now being envisioned as “precision medicine”. Some countries already link genomics to national health records while privately- owned “bio-banks” are developing.
The idea of what genetic information comprises is itself evolving. Once our definition was confined to deoxyribronucleic acid (DNA) and ribronucleic acid (RNA). Now, as genomic medicine becomes mainstream treatment for breast cancer, melanoma and leukaemia, a more precise description is emerging.
It is clear that as research advances, more will be learned from sequenced data. Eventually everyone’s data will be sequenced – the challenge is to do good things with the information. Currently, many insurers do not or cannot use genetic data (either voluntarily or by law) on the premise this prevents them doing harm with it. A reversal of this assumption, based on the positive role genetics could play in risk assessment, is required if more insurers are to access the “good” information in future.