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Health Freedom Watch
April 2005


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.

Background Information

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 added]
  • "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 research include:

  • 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 choices.

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 invasions.

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 6, 2005.

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 Fax

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: Sources:

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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 GDP Rate

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.

  • 2005 Annual Report of the Board of Trustees of the Federal Hospital Insurance and Federal Supplementary Medical Insurance Trust Funds: (

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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:

  1. breach of fiduciary duty and lack of informed consent;
  2. fraud and misrepresentation/fraudulent concealment;
  3. intentional or negligent infliction of emotional distress;
  4. conversion (using the possessions of another as one's own);
  5. violation of civil rights; and
  6. negligence.

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." [emphasis added]


  • Privacy Journal, April 2005 (, 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: (
  • Havasupai Tribe et al. v. Arizona State University, 3:04-CV-1494, (D. Ariz.): Tilousi, et al. v. Arizona State University, 3:04-CV-1290.

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Health Freedom Watch is published by the Insitute for Health Freedom. Editor: Sue Blevins; Assistant Editor: Deborah Grady. Copyright 2005 Institute for Health Freedom.