(Email newsletter published by the Institute
for Health Freedom)
Should a Federal Committee Recommend
Making Your Family’s Genetic History Available on the Internet?
Send Public Comments by May 6!
A taxpayer-sponsored committee of 13 genetics specialists from
academia and industry (plus 19 nonvoting federal
employees) may make recommendations about genetic testing and
services to the secretary of Health and Human Services (HHS)
that could affect your family’s privacy for years to come. Citizens
concerned about infringements on their genetic privacy should
submit comments by May 6, as noted below. Following is background
information and important issues to consider about proposals
to expand genetic testing and services.
On April 4 the HHS Secretary’s Advisory Committee on Genetics,
Health, and Society (SACGHS) requested public comment on its
draft report, “Coverage and Reimbursement of Genetic Tests and
Services.” Among the proposals are these:
- “Reliable and trustworthy information about family
history, genetics and genetic technologies should be
developed and made more widely available through the internet
and other mechanisms that allow patients and consumers to evaluate
health plan benefits and health providers so that they may make
the most appropriate and most financially responsible decisions
for themselves and their families.” [emphasis added]
- “Medicare beneficiaries who lack current signs,
symptoms, or personal histories of illness stand to benefit
clinically from predictive and predispositional genetic
tests and services. As such, SACGHS recommends that
preventive services, including predispositional genetic tests
and services, meeting evidence standards should be covered under
Medicare.” [emphasis added]
- “...[T]he Secretary should strive to incorporate genetics
and genomics into relevant initiatives of HHS, including the
National Health Information Infrastructure.” [emphasis
- “Genetic tests and services in pediatrics
and those with a prevention component should be considered specifically
with respect to the benefits they can offer the populations
they serve.” [emphasis added]
- “Qualified health providers should be allowed to bill
directly for genetic counseling services....CMS [Center
for Medicare & Medicaid Services] should deem all non-physician
health providers who are currently permitted to bill directly
any health plan—public or private—eligible for an NPI [National
Provider Identifier].” [emphasis added]
- “The Secretary should task an appropriate group or body
to develop a set of principles to guide coverage
decision making for genetic tests.” [emphasis added]
Issues to Consider
Two of the most important issues to consider with genetic testing
are informed consent and privacy.
According to a September 2000 Gallup survey titled “Public
Attitudes Toward Medical Privacy,” 86 percent of adults feel
a physician should ask permission before running additional
tests (during the course of regular testing) for genetic factors
that may be related to possible health problems. Ninety-three
percent said medical and government researchers should not
be allowed to study an individual’s genetic information unless
they first obtain his or her consent.
Twila Brase, president of Citizens’ Council on Health Care,
points out that some of the implications of unconsented genetic
- potential discrimination in insurance coverage and employment;
- lawsuits against health-care institutions;
- violation of religious or cultural beliefs;
- psychological and financial impacts of predictive testing;
- distrust of medical institutions; and
- statutory restrictions on lifestyle, marriage, or procreative
Brase notes that in genetic studies conducted by the National
Institutes of Health, some 32 percent of eligible people who
were offered a test for breast-cancer risk declined to accept
it. The most common reasons for refusing were concerns about
health-insurance discrimination and loss of privacy.
Moreover, according to a committee of genetics experts (of the
Hastings Center’s project Genetic Dilemmas in Primary Care),
“Because the risks and benefits of genetic testing are complicated
and their evaluation so contingent upon the perspective of the
particular patient, the Task Force on Genetic Testing has called
for what has been referred to as an expanded informed consent
process....The point is that there are few cases where clinicians
can recommend with confidence that a given patient should or
should not have a particular genetic test. This is a shared
decision, based on a discussion of the individual patient’s
values and coping styles, as much as it is based on a patient’s
medical status.” In other words, the complexities involved
with genetic testing will require clinicians to expand their
role as health educators in helping citizens understand the
benefits and risks of genetic testing.
The other important issue is privacy. As the Institute for
Health Freedom has been stressing, the federal medical-privacy
rule (released in December 2000 and modified in August 2002)
eliminated the precious right to give or withhold consent before
one’s personal health information—including genetic information—can
be accessed by many others. Thus until that right is restored,
facilitating the sharing of family history and genetic information
through the Internet simply is a recipe for increased privacy
What Can You Do?
You should make your views known to the federal
genetics committee. After all, your tax dollars are funding
this work and it’s important to make sure your preferences are
incorporated into the committee’s final report. Additionally,
you should voice your own opinions to your elected
representatives (perhaps sending them a copy of your comments).
Comments on the draft report should be submitted to HHS by May
Comments can be mailed to:
Secretary’s Advisory Committee on Genetics, Health, and Society
Attn: Suzanne Goodwin
NIH Office of Biotechnology Activities
6705 Rockledge Drive, Suite 750
Bethesda, MD 20892
E-mail comments to Suzanne Goodwin at email@example.com.
Fax comments to 301-496-9839.
For further information contact Suzanne Goodwin at the above
address; by phone at 301-496-9838; or by e-mail: firstname.lastname@example.org.
- Federal Register, Vol. 70, No. 63, April 4, 2005, p. 17085-17086:
- Secretary’s Advisory Committee on Genetics, Health, and
Society (SACGHS) website: http://www4.od.nih.gov/oba/SACGHS/public_comments.htm.
- “Coverage and Reimbursement of Genetic Tests and Services:
Draft Report of the Secretary’s Advisory Committee on Genetics,
Health, and Society” online at: http://www4.od.nih.gov/oba/SACGHS/reports/CR_report_public_comment_draft.pdf.
- Gallup survey, “Public Attitudes Toward Medical Privacy,”
September 2000: http://www.forhealthfreedom.org/Gallupsurvey/index.html.
- Citizens’ Council on Health Care (CCHC) Policy Brief “Questions
to Ask – Mayo/[University of Minnesota] Genetic Research Plan,”
March 2005: http://www.cchconline.org/pdf/MayoUGeneticsBrief04-05.pdf.
- Genetic Dilemmas in Primary Care: http://www.geneticdilemmas.org/featured5.html.
[Back to Contents]
Medicare Rx Spending to Outpace GDP
Growth; Hospital-Spending Growth Not Expected to Slow
The 40th annual Medicare Trustees report to Congress, released
on March 23, reveals the financial status of the nation’s largest
government health-care program. Following are some of the most
significant findings/forecasts from the report and corresponding
potential consequences for all taxpayers.
Prescription-Drug Benefit Growth Rate Will Be Nearly Double
Spending on the new Medicare prescription-drug benefit (Medicare
Part D, which takes effect in 2006) is estimated to grow annually
by 10 percent from 2006 to 2014. That growth rate is nearly
double the estimated average annual GDP growth rate
of 5.1 percent! Medicare prescription-drug spending is projected
to cost more than $1 trillion over nine years (2006-2014). Medicare
Part D will be financed primarily by general tax revenues—not
through a Medicare trust fund like Part A (the Medicare hospital-insurance
trust fund, known as HI).
To sustain the rapidly growing expenditures of Medicare Part
D, all working Americans will have to pay higher taxes, or other
taxpayer-financed programs will have to be reduced.
Medicare Hospital Expenses Exceed Payroll-Tax Revenues
In 2004 HI payroll-tax revenues fell short of HI expenditures,
creating an imbalance for the first time since 1998. Total
HI payroll taxes amounted to $153 billion compared with $164
billion in benefit payments. Wage growth was lower than earlier
HI payroll-tax estimates.
Total HI expenditures are projected to increase from $182.5
billion in 2005 to $323.9 billion in 2014. The report also stresses
that HI fund assets will be exhausted in 2020. Thus in the
long run, hospital spending deficits will require substantial
increases in tax revenues and/or reductions in benefits.
Conservatives who pushed for the prescription-drug bill claimed
that it would help reduce Medicare costs. The
logic was that expanding drug coverage for seniors (even though
the majority already had coverage) would help keep them from
being hospitalized and thus lead to lower hospital costs. However,
projected hospital spending has actually increased
since the passage of the drug bill. There are many factors
affecting Medicare cost increases, such as increased payments
to rural areas, economic factors, etc. But one thing is certain:
American taxpayers have taken on a very large financial burden
by adding the drug benefit.
Prompt and Decisive Action Required
The report concludes, “The financial outlook for the Medicare
program continues to raise serious concerns. Total Medicare
expenditures were $309 billion in 2004 and are expected to increase
in future years at a faster pace than either workers’ earnings
or the economy overall....We believe that prompt, effective,
and decisive action is necessary to address [Medicare’s] challenges.”
There is no doubt about it. Medicare is going to need a major
overhaul in the near future. And adding more benefits (such
as proposed genetic screening tests) without seeing if the drug
benefit actually helps reduce hospitalizations would be irresponsible
and potentially damaging to the nation’s economy.
[Back to Contents]
Indian Tribe Sues Researchers for
Unconsented Genetic Studies
When members of the Arizona-based Havasupai Tribe agreed to
allow researchers to collect some 400 blood samples for diabetes
testing and research, they had no idea their genetic information
would be used to study them for schizophrenia and inbreeding.
The members object to this stigmatizing research and say they
would not have authorized it because it conflicts with their
religious beliefs, according to Lori Andrews, professor of law
at Chicago-Kent College of Law. The Havasupai insist they should
have been asked to consent to such research.
The Tribe’s litigation lists six causes of action:
- breach of fiduciary duty and lack of informed consent;
- fraud and misrepresentation/fraudulent concealment;
- intentional or negligent infliction of emotional distress;
- conversion (using the possessions of another as one’s own);
- violation of civil rights; and
Andrews points out, “The pending lawsuits will determine whether
certain acceptable practices for animal research require
a higher level of ethics when applied to the human realm.”
- Privacy Journal, April 2005 (www.privacyjournal.net),
citing “Havasupai Tribe Sues Genetics Researchers” by Lori Andrews,
J.D. This article was originally published in Law and Bioethics
Report (Volume 4, Issue 2), 2004, pp. 10-11: http://www.louisville.edu/medschool/ibhpl/lab_report.htm.
- Havasupai Tribe et al. v. Arizona State University,
3:04-CV-1494, (D. Ariz.): Tilousi, et al. v. Arizona State
[Back to Contents]
Health Freedom Watch is a monthly email newsletter published
by the Institute
for Health Freedom (IHF), a national nonprofit, educational
organization whose mission is to bring the issues of personal
health freedom to the forefront of the American health-policy
debate. IHF monitors and reports on national policies that affect
citizens' freedom to choose their health-care treatments and
providers, and to maintain their health privacy--including genetic
privacy. IHF is not affiliated with any other organization.
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