Entrepreneurial Thought Leaders: Ryan Phelan

The CEO of DNA Direct (full discolure…and my boss/friend/mentor) recently gave a talk at Stanford as part of the Entrepreneurial Thought Leaders (ETL) seminar series. In her presentation, she tells the story of her life as an entrepreneur and her experiences with founding and operating a number of ventures, most of them in the consumer health arena. Among them were Planetree & Direct Medical Knowledge (later acquired by WebMD). Check it out:

Ryanphelan_etl

Video, Audio Podcast MP3, and also available via iTunes (search ETL or Ryan Phelan)

I highly recommend checking out the whole series of speakers and the archive.

SF Chronicle Profiles Ryan Phelan

The San Francisco Chronicle has a very nice feature on my boss and friend, Ryan Phelan, in this Sunday’s paper.  This issue discusses her history as a social entrepreneur and her newest venture, DNA Direct, where I am employed.

Dnad_office
A thumbnail of the office where I work.  See more pics here.

Katherine Seligman. The Social Entrepreneur. San Francisco Chronicle. Sunday January 8, 2006.

IBMs Pledges to Protect Genetic Privacy of Workforce

Developing story from the New York Times:

I.B.M., the world’s largest technology company by revenue, is promising not to use genetic information in hiring or in determining eligibility for its health care or benefits plans. Genetics policy specialists and privacy rights groups say that the I.B.M. pledge to its more than 300,000 employees worldwide appears to be the first such move by a major corporation.

Steve Lohr. "I.B.M. to Put Genetic Data of Workers Off Limits" October 10, 2005

Update: Over at IBMs excellent collaborative blog on the future of healthcare, HealthNex, IBM’s Chief Privacy Officer Harriet Pearson introduces the genetic privacy policy and says "I hope the fortuitous coincidence of these public events [Eddy Curry case, IBM's policy, etc] — and many
more that will certainly arise in the weeks, months and years ahead –
will promote the kind of discussion around the future importance of
genetic security and privacy that our policy initiative today was
intended to generate."

Update2:  Amy Barrett. "IBM’s Smart Stance on Genetic Testing" OCTOBER 11, 2005

Genetic Screening and Life Insurance

Quest Diagnostics recently acquired LabOne, which puts them in the position to get involved in genetic screening of life insurance applicants.  A recent quote from the CFO of Quest (via Medscape):

"Gene-based testing allows you to do predisposition testing, and I don’t know that there’s a lot of that done today on the life insurance side, but certainly that’s an opportunity as we go forward because it gives you a better profile of the individual’s risk," said company Chief Financial Officer Robert Hagemann.

What does this mean for life insurance and those seeking it?  I don’t have the answers to this question at the moment, but the best source of information that I’m aware of on this subject is a recent book edited by Mark Rothstein (who also edited a collection of papers on genetics and privacy).

Mark Rothstein (editor). Genetics and Life Insurance : Medical Underwriting and Social Policy. MIT Press, 2004.

Innovation Futures: How much would you pay for Solexa?

Innovation Futures, a prediction trading venue, has starting betting on Solexa (Nasdaq:SLXA).   Traders are asked to judge the size of Solexa’s market cap as it will be at the end of the trading day on June 6th 2005.  Currently the futures market finds a 39% probability that the market cap will be between $320 and $330 million.

Solexa Developments

Solexa and Lynx Therapeutics have completed their merger.  Solexa is now up and running on the NASDAQ with the ticker SLXA.  They are developing technology that promises to bring down the cost of sequencing.  They recently completed their first full genome sequencing job using their new "DNA cluster" technology.

DNA Direct Offers Genetic Testing Direct to Consumer

San Francisco based DNA Direct began offering genetic testing services direct to consumer (DTC) in early October.  You may remember that DNA Direct was introduced on this blog back in March, in reference to a New York Times article on DTC genetic testing.   

Currently DNA Direct offers genetic testing services for inherited blood clotting disorders and plans to offer testing services for other conditions in the future. 

Here is a summary of the testing process (see here), as outlined on their excellent webpage:  The decision to test is made by a medical consumer, perhaps with the aid of a risk assessment questionnaire offered free on their website.  A cheek swab kit is mailed to the person, swabbing ensues, and the kit is mailed to a lab for analysis.  A ten chapter personal report is made available via the web.  It contains the results of the test and descriptions of how to understand the results in relation to risks, lifestyle, family, and healthcare.  DNA Direct also provides genetic counseling services over the phone.

In a recent press release, CEO Ryan Phelan discusses her motivation for founding DNA Direct:

β€œAt DNA Direct, we believe that testing is about empowerment - your body and your health are ultimately your responsibility, and your genes offer tremendous insight into personal, medical and lifestyle choices…Genes are a valuable part of the equation, and they must be interpreted in context and in privacy. We have set up a unique service that does just that – while providing individuals with knowledge and insight to take control of their personal health.”

DNA Direct

DNA Direct, "Lifestyle & Heredity: Genetic Test Helps Individuals Evaluate and Reduce Blood Clot Risk", Yahoo! Oct 13, 2004.

Naomi Freundlich, "Genetic Predictions: Just a Swab Away." NYT March 21, 2004.

GeneClinics: Factor V Leiden Thrombophilia

KU Medical Center: Factor V Leiden Thrombophilia

Myriad DTC Genetics Marketing

Between September 2002 and February 2003 a genetic test was marketed direct-to-consumer (DTC) by Myriad Genetics, perhaps the first legitimate medical genetic test to go DTC.  The ad campaign by Myriad was for BRCAnalysis, a genetic test measuring risk for breast and ovarian cancer based on the presence/absence of mutations in specific genes.  The campaign aired in only two cities, Denver and Atlanta.

A recent Business Week article describes Myriad’s campaign as well as a follow-up study conducted by the CDC assessing it’s impact on consumer behavior in the test markets.  The CDC report provides the following summary of these results:

"consumer and provider awareness of BRCA1/2 testing increased in the pilot cities and… providers in these cities perceived an impact on their practice (e.g., more questions asked about testing, more BRCA1/2 tests requested, and more tests ordered)."

So far so good.  Then the authors of the CDC study continue:

"However, in all four cities, providers often lacked knowledge to advise patients about inherited BOC and testing. These findings underscore the need for evidence-based recommendations on appropriate use of genetic tests and education of providers and the public to achieve maximum individual and public health benefit from genetic testing."

Indeed, there are only about 400 genetic counselors in the U.S. that specialize in cancer genetic counseling.  A napkin sketch of the numbers…approx. 290 million U.S. population, 150 million female population, say 1% of the female population are candidates for genetic testing for breast cancer, then roughly 1.5 million women are potentially in need of genetic counseling at some point for this test.

How about virtual genetic counseling?  Probably not for everyone, but likely to get much much better (and much much more popular?).  A recent EurekaAlert public release describes a recent study of virtual genetic counseling for breast cancer:

An interactive computer program developed at Penn State College of Medicine is as effective as one-on-one genetic counseling for increasing knowledge of breast cancer and genetic testing among women at low risk for breast cancer…Counselors were, however, more effective than the computer program at reducing women’s anxiety and helping them to more clearly understand their risk.

"’These results suggest that the computer program has the potential to stand alone as an educational intervention for low-risk women, but should be used in combination with one-on-one genetic counseling for women at high risk,’ said Michael J. Green, M.D., M.S., associate professor of humanities and medicine, Penn State College of Medicine. ‘The computer program is an alternative means of communicating information about genetic testing and may help women without access to genetic counselors to decide whether or not to have genetic testing for susceptibility to breast cancer.’"

How will personal genomics change the nature of genetic testing?  Currently, a person may go to their doctor or genetic counselor to discuss the availability, accuracy, and helpfulness of genetic tests for a specific disease that is prevalent in their family.  This person may decide to go ahead with the test; a buccal swab is taken and sent to a lab; several weeks pass and the patient and doctor meet again to discuss the results.  In the future, a person might need only to jump online, access their genome (which is attached to their electronic medical record), and click-through a virtual test since the genome sequence is already known.  Educational materials and virtual counseling are available throughout this online experience.  For those who desire face-to-face counseling (including the possibility of video webchat), an appointment can be made online at any time.

References:
Amy Tsao. Genetic Testing Meet Mad Ave. Business Week.  July 28, 2004.

Jacobellis, J. et al. Genetic Testing for Breast and Ovarian Cancer Susceptibility: Evaluating Direct-to-Consumer Marketing — Atlanta, Denver, Raleigh-Durham, and Seattle, 2003.  MMWR weekly. 53(27):603-606 July 16, 2004.

The press release announcing the DTC campaing for BRCAnalysis by Myriad Genetics.

Press Release. Virtual counselor supplements traditional genetic counseling. EurekaAlert. July 27 2004.

Green MJ et al. Effect of a computer-based decision aid on knowledge, perceptions, and intentions about genetic testing for breast cancer susceptibility: a randomized controlled trial. JAMA 292(4):496-8.

Other Resources:
National Cancer Institute on Breast Cancer

National Cancer Institute on Ovarian Cancer

Myriad Genetics on Ovarian and Breast Cancer

 

Consumer-Driven Health Care

Regina Herzlinger is convinced that markets are the key to providing medical consumers what they need: choice, control, and information (CCI).  She is the editor of a new collection of papers entitled Consumer-Driven Health Care: Implications for Providers, Players, and Policy-Makers (Amazon shows publication date to be April 9th).  This book (which I have neither read nor received in the mail yet) promises to update and expand the vision she described in her last book Market-Driven Healthcare (1997).

Here is a recent interview with Herzlinger:
Richard L. Reece M.D. "Herzlinger: From Market-Driven to Consumer-Driven Healthcare" HealthLeaders Magazine. March 15 2004.

Genomic Harvest: Part III

The third of ten articles by Malorye A. Branca on "how genomics technologies are transforming drug discovery" is on Merck.

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