CMAJ: Who should hold the keys to your DNA?

Editor’s note: Third of a multipart series on genetic testing.
Part 1: Separating hype from reality in the era of the affordable genome (www.cmaj.ca/lookup/doi/10.1503/cmaj.109-4143).
Part 2: Popping the genetics bubble (www.cmaj.ca/lookup/doi/10.1503/cmaj.109-4142).
Next: Race and genetics in the doctor’s office



CMAJ: Who should hold the keys to your DNA?

"Opinion is divided over whether doctors or patients should be receiving the results of direct-to-consumer genetic tests........."

"“I think there is a need to think this through and to have some balance. On the one hand, we should respect consumers’ preferences and freedom to choose,” says Peter Neumann, director of the Center for the Evaluation of Value and Risk in Health at the Institute for Clinical Research and Health Policy Studies at Tufts Medical Center in Boston, Massachusetts and lead author on the paper. “We should also inform them about the risks and benefits.”
In some countries, governments have stepped in to ensure that doctors are the ones who must inform consumers about risks and benefits. Laws in France, Germany, Portugal and Switzerland stipulate that genetic tests only be administered by physicians. There are no regulations in Canada and few in the United States, though the US Food and Drug Administration has indicated that it will be stepping up efforts in the area...." 

New Survey Gauges Opinions on What to Do With Genetic Information - ABC News + link to survey

media report -  ABC News

~~~~~~~~~~~~~~~~~~~~~~~~~~~~

link to the website/questionnaire:

GenomeEthics: 

Questionnaire:

Why should I participate?

Is it confidential?

What does it involve?

Who can take part?

• Anyone can participate in our questionnaire and you don't have to know anything about genomics or genetics already.
• We are inviting the following groups: genomic researchers, health professionals, lay members of the public.

 

 

 

abstract: Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study

"....Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects.

Conclusion:Our findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing."

Medscape: Most Parents Disclose Cancer Gene Results to Children

1) Medscape link

 January 10, 2012 — The majority of parents who are tested for BRCA1 and BRCA2 genes share those results with their children. In fact, a number of parents even discuss the results with very young children, according to a study published online January 9 in Cancer....

2) Cancer Journal

link to abstract:  When parents disclose BRCA1/2 test results: Their communication and perceptions of offspring response

Systematic Immunohistochemistry Screening for Lynch Syndrome in Early Age-of-Onset Colorectal Cancer Patients Undergoing Surgical Resection

This strategy identifies a substantial number of LS patients who would have been missed if genetic testing was based on the Amsterdam II Criteria alone.

Platinum sensitivity-related germline polymorphism discovered via a cell-based approach and analysis of its association with outcome in ovarian cancer patients (rs1649942)

full free access: Effect of Direct-to-Consumer Genomewide Profiling to Assess Disease Risk — NEJM

A Do-It-Yourself Genomic Challenge to Myriad, the FDA and the Future of Genetic Tests (long)

Aetna Funds BRCA Gene Test Study (Florida) GenomeWeb

abstract: Effect of genome-wide association studies, direct-to-consumer genetic testing, and high-speed sequencing technologies on predictive genetic counselling for cancer risk : The Lancet Oncology

dna dilemma (series of articles) - Newsweek

Note: series (5) of media articles on genetic testing

Gene-Testing Companies May Need U.S. Regulators Review, FDA Letters Say - Bloomberg

The Big Flap About Pathway Genomics and Walgreen's: Topol on Genomics

A few weeks ago, Pathway Genomics, a consumer genomics company, had planned to have its saliva kits at all US Walgreen's drug stores. The FDA put a stop to it. Congress is now investigating the matter. What is going on here?
http://www.nytimes.com/2010/06/12/health/12genome.html?scp=1&sq=pathway%20genomics&st=cse