Patient autonomy is the right of a patient to choose what happens to them. The question
of what uses of a patient's data are permissible, is not exclusively a question of privacy
but also one of autonomy. Is it OK to require a person to allow their data to be used for
risk profiling or diagnosis as a condition of performing the service for them?
Risk prediction is an important part of personalized medicine, but it requires a fairly large
sample of individuals on which to base the prediction. Moreover, the individuals used
should be fairly similar to the patient (or patients) whose disease risk we want to
estimate.
One of the most promising ways of doing this is by using data collected by hospitals. This
is called a "secondary use" of health data since it is not being used for its original purpose
- making a diagnosis about the patient from whom it was collected.
There are other potential secondary uses also, including using this data for
pharmacogenomic drug development - another important goal of personalized medicine.
These secondary uses are not currently possible, and policies must be developed to allow
this data sharing in such a way that protects a patient's confidentiality and their right to
opt-out of these uses.
For healthcare providers, personalized medicine offers the potential to improve the
quality of care, through more precise diagnostics, better therapies, and access to more
accurate and up-to-date patient data and sophisticated decision support tools.
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Yet, some people may not be willing
and/or capable of processing technical
risk assessment data obtained from new
omic tests.
Decision support tools will be essential to
guide treatment decisions based on test
results, as the psychological impact of
this type of information may be large.
Physicians will also require a solid
background in genomics and proteomics
to make the best use of these
sophisticated tools. |
Image courtesy of Wired magazine
Executive Editor Thomas Goetz |
Many people are without health insurance today, and many more
have insurance plans that cover only the most basic things. How can we provide access to
personalized medicine to everyone? Is access for everyone a reasonable goal? Is it an
attainable one?
There will likely be a number of levels of personalized care, and if universal access is a
goal, what level is acceptable? Is a tiered system where those who can't afford to pay on
their own receive some level of service while those who can afford it get more
comprehensive care ethically sound? It's something that looks much like our current
health care system, but many people are unhappy with that model.
"Currently, less than 5% of all US private companies reimburse for genetic tests, indicating
that the current health care delivery system may not be able to deliver effective
personalized medicine". Quote from PricewaterhouseCoopers' Health Research Institute, (2009).
[The new science of personalized medicine]
Traditionally, genetic tests have been available only through healthcare providers such as
physicians, nurse practitioners, and genetic counselors. Healthcare providers order the
appropriate test from a laboratory, collect and send the samples, and interpret the test
results so patients have the support they need when results are delivered.
Direct-to-consumer genetic testing refers to genetic tests that are marketed directly to
consumers via television, print advertisements, or the Internet. This form of testing,
which is also known as at-home genetic testing, provides access to a person's genetic
information without necessarily involving a doctor or insurance company in the process.
Genetic testing provides only one piece of information about a person's health-other genetic and environmental factors, lifestyle choices, and family medical history also affects a person's risk of developing many disorders.
These factors are discussed during a consultation with a doctor or genetic counselor, but in many cases are not addressed by at-home genetic tests. More research is needed to fully understand the benefits and limitations of direct-to-consumer genetic testing.
One of the significant barriers to genetic testing is thought to be the fear of
discrimination. Discrimination from an insurer or even worse an employer. This fear has
been indicated in several polls, including the Harris Poll in 2002.
Genetic discrimination is discriminating on the grounds of information obtained from an
individual's genome. Genetic non-discrimination laws have been enacted in most US
states, and at the federal level, by the Genetic Information Nondiscrimination Act (GINA).
The GINA legislation prevents discrimination by health insurers and employers but does
not apply to life insurance or long-term care insurance.