Saturday, July 08, 2006

Cancer Genome Atlas

Seven months ago (Dec. 2005) The Cancer Genome Atlas (TCGA) was launched. The stated mission and goal of TCGA is as follows:

The Cancer Genome Atlas (TCGA) is a comprehensive and coordinated effort to accelerate our understanding of the molecular basis of cancer through the application of genome analysis technologies, including large-scale genome sequencing.

To fulfill the mission, the National Cancer Institute and the National Human Genome Research Institute have launched The Cancer Genome Atlas Pilot Project. The pilot project will assess the feasibility of a full-scale effort to systematically explore the entire spectrum of genomic changes involved in human cancer. The overarching goal of The Cancer Genome Atlas is to improve our ability to diagnose, treat, and prevent cancer.

In the latest issue of Nature Medicine there is an interesting news article by Emily Waltz entitled "Informed Consent Issues Hobble Cancer Genome Scheme" (subscription needed). Waltz notes that the cancer genome project faces daunting ethical and practical hurdles. Here is a sample from the informative report:

Researchers plan to use more than 1,000 tumors from US tissue banks, but the samples will need to have signed consent forms from donors allowing their genetic information to be made publicly available. The tumors must also meet a long list of criteria: they must be of a certain quality and homogeneity, at a certain stage of development, preserved correctly and from patients not treated for cancer.

But there simply may not be enough such samples, some experts predict. "It doesn't look wildly promising," says Sean Eddy, a geneticist at Washington University in St. Louis and a member of the advisory committee.

The organizers may instead have to track down donors, if they are still alive, and get broader consent—a costly, time-consuming and risky proposition.

Asking donors for permission also raises questions about the consent process, and how best to educate donors about the implications of posting their DNA on the internet.

"A big part is educating the patient to make sure they understand the risks," says Amy McGuire, a bioethicist at the Baylor College of Medicine in Houston. "It's very difficult when you're dealing with complex issues such as DNA sequencing and the risks and benefits of public data.

"There is a danger, for example, that new technology for searching genetic databases could allow employers, police departments, health insurance companies and even other scientists to abuse the information and to mine the data for other reasons, such as for forensics, stigmatizing racial studies or tracing biological parents".

The challenges facing The Cancer Genome Atlas are a good example of the challenges we collectively face as we aspire to pursue and implement the demands of "genetic justice". On the one hand, justice requires we support research that seeks to mitigate the arbitrary and tragic consequences of the natural lottery of life. Yet this aspiration can conflict with other requirements of justice, such as respecting consent and genetic privacy. How do we justly accommodate these diverse compelling concerns? These are important questions in need of serious consideration.