During the summer and autumn of 2002 the Human Genetics Commission (HGC) ran a public consultation on “The supply of genetic tests direct to the public”. The HGC commissioned People Science & Policy Ltd (PSP) to undertake eight focus groups that would provide lay perspectives on the issue to augment the views of interested groups and individuals that responded to the HGC’s consultation.
Understanding of genetics
The participants tended to equate “genetic” with “inherited” and to think that genetic disorders were very serious and largely incurable. They were unsure how to use prospective knowledge, whether it indicated a definite future disease or the probability of developing a disease. Interestingly, participants thought that they did not have enough knowledge to interpret genetic test results without professional input.
Awareness and use
This study found no awareness of genetic tests sold direct to the public but it is not a statistically representative sample and so no firm conclusions can be drawn from this finding.
The main drivers to use directly supplied genetic tests were thought to be: speed; convenience; and confidentiality. However, in the context of a free at the point of delivery NHS, the market for such tests was perceived to be very limited. This perceived low level of demand was reinforced by a lack of desire to have the knowledge such tests would give. Some definitely did not want this information but others could just not see how the information would be useful to them, especially in the light of their perceptions of genetic diseases. The medical profession was seen to be the source of further information and, if necessary, treatment. Those who took part in this research therefore responded that they would head for the doctor (their GP) on receipt of the results of a genetic test, unless it was clearly negative, so confidentiality from their GP was not a main motivator.
Views were divided on whether children should be tested and generally depended on the disorder. However, parental consent was seen as a necessity.
How consent would be obtained and verified by those providing tests if they did not have direct contact with the “patient” was an issue raised by some.
Credibility of tests
The source of the test was an important element in the credibility of the test. Doctors were the most credible source followed by pharmacists, with mail order and the Internet very much less credible.
There was also some concern about how the samples would be used and whether they would be used for database building or research. Some were content for their sample to be used for research provided consent was obtained.
Test results and counselling
Some participants believed that individual members of the public are not equipped to deal with the results of genetic tests and that medical input and counselling was vital. Others believed that if people want this information they should be able to access it without controls.
There was concern about insurance companies and employers having access to genetic information or using these tests directly with (potential) customers and employees.
Concern was expressed in all the groups that the vulnerable – the elderly, those who live alone and the worried well – should be protected from those seeking to sell genetic tests direct to the public.
However, the view was also expressed that there should be “public information” about the tests and their availability for those who might want to purchase a genetic test.
None of the participants was in a position to say whether existing legislation is adequate and we did not try to inform them about the current situation. We sought to elicit the framework the participants would expect to be in place.
Views were divided between strict regulation and a free market but self-regulation by the supplier companies was seen as flawed by all those who took part in this research. While it was accepted that some companies would adhere to a voluntary code, it was felt that others would not and that therefore this would not protect the public. The question of a voluntary code of conduct for medical professionals was not explored.
“Genes Direct” – The Human Genetics Commission Report
The findings of this project were used in the development of the HGC report ‘Genes Direct – Ensuring the effective oversight of genetic tests supplied directly to the public’.