Genomics DTC

"Consumer access to predictive testing is gated by primary care providers, who are expected to offer education, informed consent, interpretation of test results, genetic counseling, and follow-on care. There is increasing evidence that this channel is ineffective.

Few primary healthcare providers have the time or specialized training to provide interpretation or counseling. Many are uncomfortable providing such services. While there are specialists trained in genetics and genetic counseling, most are involved in prenatal diagnosis or treatment of genetic disease in children.

Managed care providers and payers have not invested in the resources necessary to deliver quality genetic services at the scale required to meet consumer demand. There is little economic incentive to offer predictive genetic testing given the near-term cost of tests and support services, consumer transience, and the long-term economic benefits that accrue from disease prevention. Moreover, disparities in access to healthcare and limited utilization of the health system for wellness in general, further limit consumer access to these products…

A DTC channel that provides consumers with direct, confidential access to genetic testing services could redress the limitations of the current system."

This from Fred Ledley and Harold Washburn in a December’s DTC Perspectives Magazine.  Fred Ledley, a medical doctor, is one of the few to address the challenges and opportunities of bringing genomics to consumers.  At a conference in Portugal in 2001, Ledley summarized these challenges and opportunities:

"I believe we are on the verge of an explosion of opportunity arising from genomics. The self-knowledge that comes from genetic testing will enable individuals to take control of their own health and make informed decisions about how to protect health and prevent disease. How will our healthcare system respond when consumers begin walking into doctor’s offices and saying "I would like to be tested for APOE", "I would like to be tested to see which drugs are safe".

Some applications of genomics will fit will into medical practice…Few physicians, however, are using genetics to identify predisposition to disease, to counsel patients in how to avoid environmental factors which may be particularly severe risks to that individual, or to choose drugs that are most likely to be safe and effective. There is little tradition of this type of practice within primary care. While the medical community may develop the capacity to deliver some of these services, I believe we will also see the emergence of new mechanisms which enable individuals to decide on their own what genetic tests would help them make decisions about health and wellness, pay for these tests themselves, and control the privacy of their own genetic information.

I believe that one of the most exciting frontiers in medicine is to understand how we will integrate genetic tests [involving] thirty, forty or a hundred thousand genes into clinical practice, how we will respond to consumer interest in genomics, and how we will use this information to achieve real improvements in personal health."

Fred Ledley and Harold Washburn. Can DTC Deliver the Health Benefits of Genomics to the Public? DTC Perspectives Magazine, December 2004.

Fred Ledley. The Future of Genomic Testing. Presentation in Apifarma, Portugal. November 2001. (.doc)

Here is a bio of Fred Ledley.

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