Direct to Consumer Genetic Testing

The Nuffield Council on Bioethics report about Personalised Healthcare includes consideration of DTC Genetic Testing

The fall in the cost of DNA sequencing has opened the door to providing an individual with genetic information on such issues as paternity and the risk of developing or passing on a particular genetic disease. Some services are available via formal channels, but there is also a burgeoning market in direct-to-consumer (DTC) sales of genetic information and the associated interpretation of that data.

This video, made by second year students at the University of Leicester, looks at some of the ethical issues arising from the availability of personal genetic data direct from commercial companies.

The following link offer more details about: Teaching resources using the Nuffield report on medical profiling

You may also be interested in the post Is there a gene for oversimplistic analysis? from our sister site Journal of the Left-handed Biochemist.

Herceptin: Wanting the wonder drug – Panorama

This episode of the BBC current affairs series Panorama follows the story of seven women with breast cancer who campaigned to receive the drug Herceptin. It is a classic example of the tensions arising from the rise in effective but expensive new medicines set against the constrained budget of the National Health Service. At the time of filming (Summer/Autumn 2005), treatment with Herceptin cost £30,000 per patient per year and was exclusively licensed for use against advanced-stage breast cancer. However in light of some promising and well-publicised clinical trials, and motivated by Prime Minister Tony Blair’s pledge that “Cancer patients in all parts of the country will get the right drugs at the right time, regardless of where they live” (00:02:50-00:03:10), seven women with early-stage breast cancer believed that this drug may well help save their lives. The programme follows their campaign as it snowballs from a local issue to achieve national support (00:11:45-00:13:50).

The central ethical question raised by this programme is, therefore, one of resource allocation.  There is a cost-benefit analysis to be done for the treatment per se, but this also has to be seen in a broader context; a decision to fund one therapy means a decision elsewhere in the system that likely denies somebody the treatment that they want.  How do you evaluate one course of treatment over another? How do you fairly distribute public resources between patients? Can you judge the value of one life against another?

Genetic testing: would you want to know? – The Killer in Me

The Killer in Me illustrates just how far genetic testing for disease has developed. Testing for conditions caused by mutation in a single gene has been possible for some while, and examples have been considered previously in relation to programmes in the Bitter Inheritance series, e.g. Huntington’s disease (Episode 5) and Gorlin Syndrome (Episode 4). In The Killer in Me, four celebrities agree to undergo pioneering genetic tests for conditions that are under the influence of several different genes and environmental factors, such as diet. It is promised that the battery of tests will indicate their potential risk, i.e. their predisposition, to several common diseases, including heart disease, cancer and Alzheimer’s. The tests are supervised by Paul Jenkins, a Senior Clinical Researcher at Queen Mary’s School of Medicine and the co-founder of the company ‘Genetic Health’. As he explains, “We know the environmental influences that can predispose to disease, now we are able for the first time to start to determine your genetic predisposition to those diseases” (00:01:39).

The decisions about which tests to take, and the celebrities’ responses to the results of those tests, offer insights into the ethical dilemmas posed by screening. GMTV presenter Fiona Philips re-examines her mother’s past medical history, which included both breast cancer and Alzheimer’s which unfortunately led to her death. She reflects on the terrible ordeal her mother suffered for eight years, and wonders what actions she would take if the test presented that she was at high risk of Alzheimer’s (00:02:49-00:05:17 and 00:17:50-00:19:10*).