Industry using third parties to manage public concerns about genetic screening

The use of genetic tests to screen for inherited diseases is one of the most controversial applications of gene technologies.

At a conference this week, researchers will describe how industry has developed a strategy to manage public concern about these tests that appears to be very successful in the marketplace. Private companies are using intermediary organisations - trusted third parties - to reduce the risk that their services will encounter public concern.

"Many different approaches have been used by people entering the market for genetic testing services" says Dr Michael Hopkins, a Research Fellow at SPRU Science and Technology Policy Research at the University of Sussex. "But the successful ones have used a trusted third party to reduce their commercial risk. Using an intermediary organisation reduces the company's exposure to criticism by consumer organisations and other groups," he says.

The findings, which are the result of a three year study carried out with co-author Dr Paul Nightingale, also at SPRU, will be presented at SPRU's 40th Anniversary Conference on Tuesday 12 September 2006.

Hopkins says that those companies which went ahead with genetic screening services without using a trusted third party, such as a charity, soon ran into trouble.

In the past, campaign groups have raised concerns when new genetic screening services are offered without a trusted intermediary organisation operating as a buffer between business and the consumer.

"A company called Sciona offered genetic tests to guide clients' diets that were sold direct to the public in the UK," says Hopkins. "They didn't set up an arrangement with a trusted third party. Their sales tactics were called into question by Genewatch and they were criticised by the Human Genetics Commission. It was something they did not recover from, and they had to move their operations to the US."

In contrast, companies using trusted third parties to mediate their services have not suffered such commercial problems and have been much more successful.

"One company offer a combined screening service for a number of inherited diseases through a Jewish charity called Dor Yeshorum. The charity did all the front end, talking with clients, anonymising the samples, so that the company only did the testing. By using a trusted third party, the company was able to access a market that otherwise wouldn't be open without raising ethical concerns."

With the NHS offering tests and counselling that are free at the point of use, genetic testing companies have found the competition tough. Instead, they have relied on paternity testing, genealogy and veterinary testing, or found government contracts (e.g. carrying out forensic testing for the police). Hopkins says that in the future, the private sector may provide a raft of new services that are beneficial for healthcare. "The challenge is finding ways in which the private sector can profit from developing tests that the public sector cannot afford to develop. Partnerships with trusted third parties offer a route towards that goal."