Abstract
The current marketplace for direct-to-consumer (DTC) genetic testing is very
dynamic and fluid. At least 42 DTC genetic testing companies have been
identified to date, and additional market entrants are likely. Firms marketing
and selling genetic tests DTC have numerous factors to consider. This report
focuses on health-related decision-making applications of DTC genetic tests
and examines various components of this emerging business environment:
- The rapidly evolving science and technology
- The complex framework of regulatory oversight
- Social and ethical issues, including genetic privacy
- Consumers' attitudes toward genetic testing
- Activities of companies shaping this sector
- Views of industry leaders through exclusive interviews
Genetic testing has come a long way since development of the first genetic
test in 1963. According to the National Institutes of Health, almost 1,500
genetic tests are now in use. Under the traditional business model, tests are
performed with a physician' s involvement, from ordering the test to
communication of its results. But with the confluence of the Internet and
completion of the Human Genome Project, the procurement of genetic tests is
migrating from health professional-controlled domains to cyberspace, where
these tests are available to anyone. Marketing and selling genetic tests
directly to consumers not only adds a new business model that can exclude the
consumer' s physician but raises scientific, regulatory, and even ethical
issues.
Direct-To-Consumer Genetic Testing: Business Prospects in the United
States aims to sort out these complex issues surrounding the consumer
business of scanning or sequencing genomes for health-related genetic
information. The Washington-level federal dialog has started over the medical
legitimacy of the genetic tests offered to consumers, how the information is
being used, and the appropriate way to make sure that good scientific,
medical, and ethical standards are set and not compromised. We provide a
detailed look at the current US regulatory framework and how the
“patchwork quilt” of today' s regulations is ripe for reform.
The latest market entrants offering genomic scans or gene sequencing for
disease markers or other personal traits currently have similar business
models but appeal to very different consumer segments. We compare and contrast
the approaches, offerings, and messaging of various DTC genetic testing firms
operating today. We delineate aspects of this emerging business environment
that current or prospective participants may need to consider, given its short
history and its uncertain outlook as the technology evolves, the regulatory
dialog continues, and the voices of many groups - including consumers,
physicians, scientists, entrepreneurs, and public interest groups - are heard.
Importantly, the voice of the consumer cannot be understated.
Direct-To-Consumer Genetic Testing: Business Prospects in the United
States presents a sample of the more recent and relevant research that has
been conducted on consumers' attitudes toward genetic testing, exploring such
issues as their willingness and motivation to have a genetic test, how much
they would pay for it, who they would share the results with, privacy
concerns, and how important they believe physician involvement is. This
information is complemented by in-depth interviews with the industry' s thought
leaders and pioneers, who share their views on current business dynamics and
directions in which the field may go.
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