TEDMED, 23andMe and Kaiser Permanente's RPGEH

Nov 3, 2009, 8:22 AM, Posted by

Excitement about the power of genomics was palpable at TEDMED this year as some attendees lined up to spit in DNA vials and send it off to 23andME. Unfortunately, many may be disappointed to find out how little our genomes can tell us without research that a large population-based research program, such as we are helping to build at Kaiser Permanente, can provide. Ann Wojcicki, CEO and founder of 23andMe, stated from TEDMED stage that Kaiser Permanente plans to genotype the DNA of 100K members but does not plan to provide that information to the individuals who donated their DNA, implying that valuable information was being withheld.

We asked Cathy Schaefer, executive director of the Kaiser Permanente Research Program on Genes, Environment and Health (RPGEH), to respond.

The RPGEH is designed to conduct research on populations to improve health and medical care. The information collected, including the genotyping of 100,000 individuals for our NIH-funded grant, will enable researchers to conduct population-based research that may help them understand the genetic and environmental basis of disease, treatment response, and health.

We inform all participants about the purpose of collecting genetic and other information, and they volunteer to participate — at no cost to them — to facilitate this research, knowing their individual results will not be returned to them and that all data about them will be "de-identified." We also inform participants that if we discover something in their data or samples that may be important to their health, we will contact them to learn if they want to have the information. 

Why doesn't the RPGEH restructure so that it can return results to individuals? Because genetic information obtained through today's genome-wide studies has not been designed to be useful to individuals; it is designed for use in research. In most cases, it isn’t known whether the variants tested for are actually implicated in a disease process, or are markers for variants that play a role in disease, and results from these tests are rarely actionable.

Ann Wojcicki from 23andMe misspoke at last week’s TEDMED gathering when she said that Kaiser Permanente does not return genetic results. Kaiser Permanente Health Plan members have access to genetic testing as part of their Health Plan membership and through their physicians. Kaiser Permanente physicians order genetic testing and return genetic results to thousands of patients, for numerous conditions, when information that testing will provide could help to inform the patient’s health care, disease prevention, or future childbearing. For example, members with some cancers or HIV may have genetic testing to determine the most effective treatment. Couples considering pregnancy may also be tested to determine family histories for certain diseases that may be passed on to their children.  

Individuals who have questions about their genetic risks for various health conditions should talk to their physicians, who can provide useful information about risks and options for testing.

This commentary originally appeared on the RWJF Pioneering Ideas blog.