Providing Testimony: Getting Involved in Social Policy

Types Of Social Policy
Creating Social Policy
The Role of the Genetic Nurse in Setting Social Policy
Evaluating Policies
Testimony:
    — Oral
    — Written
Conclusion
References
Mock Testimony Examples:

• Insitutional Mock Testimony:
  Genetic Testing for Breast/Ovarian Cancer
  By Dianne D. Chapman, RN, MS

• Legislative Mock Testimony:
  Genetic Information Non Nondiscrimination in Health Insurance Act of 1995
  By Marcia Hankammer, RN, MS

• Social Policy Mock Testimony:
  The Use of Infant Bone Marrow for Bone Marrow Transplantation
  By M. Colleen Welles, RN

Types of Social Policy

A second type of social policy is created by specific associations or special interestgroups. For example, the Huntington Disease Society has developed a position statement regarding Huntington Disease testing. The American Nurses Association has several position statements concerning withdrawal of food and hydration and assisted suicide. With any association position statement, the reader must consider whether the association has preferred positions which will be reflected in their position statements.

The third type of social policy occurs through state and/or national legislation. The United States of America has developed numerous social policies through legislative action which impact genetic health care such as: Medicaid and Medicare, Baby Doe regulations, legislation on discrimination and disabilities, and Patient Self Determination Act of 1990.

Creating Social Policies

In contrast, the evidentiary model uses objective data regarding the costs and benefits associated with the concept under consideration. In addition to considering empirical justifications, normative features must also be described such as defining outcomes and expectations. Finally, these normative definitions must be discussed and established through public debate and discussions (Wilfond, 1995).

The Role of the Genetic Nurse in Setting Social Policy

Evaluating Policies

1. Identify the goals of the policy
2. Define who and/or what is to be the target of change in this policy.
3. Identify the mechanisms for developing and carrying out this policy.
4. Identify expected as well as possible unintended consequences which will occur as a result of this policy.P>

Testimony

• explain the importance of the issue
• begin with a reliable supposition
• focus on each premise individually
• use concrete terms consistently
• use only one meaning for a particular word
  (for example, care can mean "I care about you" or "I provided physical care")
• avoid loaded language which uses emotions to sway the listener or comes off preachy
  (for example, "Playing God")
• provide a clear conclusion

• identify themself and their expertise
  (for example, I am a RN with certification in Genetics)
• if addressing a legislative body, note that you live in their district
• identify any relevant professional organizations in which you are a member. Professional membership implies that others would hold similar views (personal communication Sue Clark RN, Illinois Nurses Association Lobbyist).

Oral testimony is usually timed and the speaker will be cut off at the end of the allotted timeframe. Before providing oral testimony, you should practice your testimony. Remember that people typically speak at the rate of 100 words per minute therefore, counting the words in your written testimony can give you a rough estimate of how many minutes you will be speaking.

You need to know your testimony "cold" so that you provide your testimony even if you have presentation jitters. As with any speech, the speaker must grab the listeners' attention immediately. In addition, a question and answer period may follow oral testimony. Again, you should rehearse with colleagues potential questions which you may be asked. If you don't know an answer to a particular question, tell the questioner you will research the answer an get back to him-THEN MAKE SURE THAT YOU DO!!

As with any professional activity, you should be dressed professionally and regardless of what happens you must keep your cool and respond professionally. You may also want to bring several written copies of you testimony to distribute if requested or to leave for an absent member.

Written Testimony

A written testimony can be just as persuasive and important as an oral testimony. Written testimonies often occur in the form of a letter. Additional points to remember when writing your testimony include:

• Make sure you have addressed your letter correctly.
• Keep your letter to less than one page in length.
• At the end of your letter, thank the reader for their consideration, assistance and/or time.
• Report any responses back to your professional organizations if appropriate (Smith, 1996)
• Always write on plain white paper or letter head stationery. Do not use scented paper or decorative designs.
• Type or word process your letter.
• Remember to check your spelling and grammar.
• Request a written reply. A written reply will reflect if the receiver understood your position. If not, write again.
• Include a return address and phone number.

Examples

Conclusion

References

Reilly, P. (1992). ASHG statement on genetics and privacy: Testimony to United States Congress. American Journal of Human Genetics, 50, 640-642.

Smith, K. T. (1996). AMSN News, 5(2), 2-3.

Warwick. D. P., & Kelman, H. C. (1976). Ethical issues in social intervention. In W. G. Bennis et al. (Eds.) Planning of change (3rd ed, pp 470-496). New York: Holt, Rinehart & Winston.

Weston, A. (1992). A rulebook for arguments (2nd ed.). Indianapolis, IN: Hackett Publishing Company.

Wilfond, B. S. (1995). Screening policy for cystic fibrosis: The role of evidence. The Hastings Center Report, 25(3), S21-S23.

Institutional Mock Testimony:
Genetic Testimony for Breast/Ovarian Cancer
Dianne D. Chapman RN, MS

I am grateful for the opportunity to speak to Anywhere HMO about the importance and necessity of genetic testing for breast/ovarian cancer. I come to the forum not only as an advanced nurse-practitioner specializing in genetics, but also as a breast cancer survivor. The Universal Cancer Society estimates that 200,000 women will be diagnosed with breast cancer and 54,000 women will die from these diseases in 1997. The inherited form of these diseases will account for approximately 16,000 diagnoses, which are often delayed owing to the difficulty of detecting ovarian cancer and the presumption that a woman in her 20's or 30's is too young for breast cancer. Family history is the most important and significant risk factor considered during the assessment.

John Doe, manager of the utilization review department for Anywhere HMO, indicated that the process for review and approval for genetic testing is done on a case-by-case basis. Mary Smith is an enrolled patient in Anywhere HMO and is currently petitioning for genetic testing based on her personal and family history. Ms. Smith developed breast cancer at 32 years of age. Her mother developed ovarian cancer at 34 years of age and colon cancer at 49 years of age. Additionally, Ms. Smith's maternal aunt, great aunt, and two cousins also have breast cancer. Ms. Smith has 4 older sisters who have had hysterectomies for abnormal cellular conditions.

Ms. Smith has a family and wants to do as much as she can to educate herself and others to be proactive in seeking preventative measures to promote survival. If Ms. Smith tests positive for a genetic mutation, her risk for developing another breast cancer and/or ovarian cancer are significantly increased. One benefit of testing allows the person to make decisions based on personal risk status and future plans. Since Ms. Smith has completed her family, elective removal of her ovaries may save her life.

In speaking to John Doe, it appears that approval is based on Anywhere HMO's evaluation that genetic testing is a necessary service. Please refer to the guidelines in the HMO member handbook listing qualifiers which deem a service to be a medical necessity. Answering these issues, genetic testing would promote good health maintenance by assessing personal risk and creating a plan for early intervention using increased surveillance, chemopreventation agents, and/or consideration of prophylactic surgery for those who have mutations. The test consists of a blood draw, which is considered safe and denying testing could potentially delay diagnosis for Ms. Smith. Currently, the decision to test for a genetic mutation at Anywhere HMO is recommended only after a team of specialists review the family history and agree this person is a likely candidate.

Although testing is currently applicable for a small percentage of those who will be diagnosed with breast cancer, one must however be swayed by the actual numbers. The 16,000 women who will benefit also have blood relatives who will become aware of their risk and have an available plan for early detection and early intervention which will result in a cost/benefit ratio for the general insurance pool. Genetic risk assessment/testing is considered a necessary component for adequate surveillance of a high-risk family. The common goals of managed care have been to promote wellness and stress prevention and early intervention. I urge Anywhere HMO to approve genetic testing for Ms. Smith, so she can continue to exhibit health behaviors which promote survival and enhance quality of life.

The following mock testimony is included to illustrate different styles and reasons why testimony may be offered. Portions of these testimonies may have been fabricated or changed to protect confidentiality, thus, the reader should verify any fact before using in other works.

Legislative Mock Testimony:
Genetic Information Nondiscrimination in Health Insurance Act
Marcia Hankammer RN, MS

Good afternoon, my name is Nancy Brown. I am a registered nurse and a genetic health specialist affiliated with Great Care Medical Center in Great City, Fun State. I want to thank you for inviting me here today to testify in support of the Genetic Information Nondiscrimination in Health Insurance Act of 1995, which was introduced as House Resolution 2748 last December (H.R. 2748, 1995).

The rapidly increasing knowledge of human genetics and the role of genetics in disease has offered hope for the millions of people who are afflicted with a myriad of conditions which affect health, quality of life, and longevity. Genetics has improved the ability of science to predict the incidence and likely course of these diseases, in addition to offering hope for improved treatments and prevention. However, a major threat to the continuing progress in genetic medicine is the potential for misuse of genetic information about individuals and groups. I am here to address the specific problem of such misuse with respect to insurance coverage, particularly as it impacts the ability of persons to obtain health insurance who may be susceptible to genetic disorders.

As knowledge of human genetics improves, so does the potential for discrimination in health insurance coverage for a greater number of Americans. Kathy Hudson, Policy Coordinator at the National Center for Human Genome Research of the National Institutes of Health, and her colleagues have documented that health insurance providers are using genetic information to deny coverage (Hudson, Rothenberg, Andrews, Kahn, & Collins, 1996). This creates the paradoxical situation in which a person's knowledge about his/her genetic risks can hamper the ability to obtain effective medical care.

There have been numerous news accounts of incidents of discrimination against persons because of their genetic profile. For example, a pregnant woman was tested to determine the risk that her yet unborn child would have cystic fibrosis. Her physician performed this testing at her request so that the woman could make informed decisions. Her insurance company received the results of the test and threatened to withdraw coverage for her and her other children if she decided to continue the pregnancy. This type of discrimination is likely to become increasingly common as genetic tests improve in precision and scope (McClure, 1995).

In another case, an entire family lost their insurance coverage after the insurance carrier became aware that one child had Fragile X syndrome (McClure, 1995). A recent survey of people with identified genetic conditions in their families found that 22% reported being refused health insurance because of the genetic condition (Hudson et al., 1996).

There currently is no federal law prohibiting discrimination by insurers against those with suspected or identified genetic conditions. At this time, most health insurance providers may refuse coverage, charge very high premiums, or condition coverage for those with genetic predispositions (Hudson et al., 1996). Several states have adopted laws protecting consumers from discrimination by insurers with respect to genetic conditions (Hudson et al., 1996). However, these laws vary in their scope and there is a clear need for a national policy. Health insurers typically operate in several states while the health information system is national in scope. In fact, commercial information companies are preparing to provide nationwide access to medical records for their clients (Shaeffer, 1996).

H.R. 2748 (1995) is a well-focused response to the threats posed by improper use of genetic information. This bill simply prohibits insurers from denying or cancelling health insurance coverage; or varying premiums, term or conditions of such coverage based on Genetic information or the request for genetic services. The bill does not create a new bureaucracy, since existing state and federal regulators would be responsible for enforcement. Most importantly, H.R. 2748 provides civil remedies for those who can show that they have been subject to discrimination.

The most exciting promise of genetic medicine is that people will be able to anticipate potential conditions, and be able to act to minimize the sometimes devastating effects of such conditions before they otherwise would become apparent. The positive use of genetic information should be encouraged for promoting health and early intervention. Only when the punitive use of genetic knowledge is discouraged, will the positive benefits of genetic medical revolution for all health consumers be maximized.

As a health care provider who works on a daily basis to encourage families to understand the genetic factors involved in health, I know firsthand about the fear that many people have that they will be left without adequate insurance coverage if genes are found to play a role in their medical conditions. I urge the passage of H.R. 2748 as a step toward promoting preventive health, reducing the financial and societal costs of untreated genetic disorders, and providing peace of mind to those who need treatment and counseling.

Thank you for inviting me to testify and for your courtesy in receiving my comments. I would be happy to answer any questions you may have.

References

Genetic Information Nondiscrimination in Health Insurance Act of 1995, H.R. 2748, 104th Cong., 1st Sess. (1995).

Hudson, K. L., Rothenberg, K. H., Andrews, L. B., Kahn, J. E., & Collins, F. S. (1996). Genetic discrimination and health insurance: An urgent need for reform [On-Line]. Available: http://www.aaas.org/science.

McClure, H. (1995). The insurance industry's use of genetic information: Legal and ethical concerns. Journal of Health and Hospital Law, 28(4), 231-243.

Shaeffer, T. E. (1996, April 2). Keeping medical secrets a secret. The Chicago Tribune, p. 17.

The following mock testimony is included to illustrate different styles and reasons why testimony may be offered. Portions of these testimonies may have been fabricated or changed to protect confidentiality, thus, the reader should verify any fact before using in other works.

Social Policy Mock Testimony:
The use of Infant Marrow for Bone Marrow Transplantation
M. Colleen Welles RN

My name is Sue Smith. I am the Nursing Director for the Bone Marrow Transplant Center at a major midwest medical center. I am honored to have the opportunity to speak to you today about an issue with which I have many years of experience and research: the use of infant marrow for bone marrow transplantation.

Bone marrow transplants are being used with increasing frequency as a cure for cancer and have proven to be effective against many different types of cancer. Transplant entails the patient enduring rigorous chemotherapy and radiation protocol to rid the body of the cancerous cells. The donated marrow is then infused into the patient and eventually, the patient's body will begin using the marrow and producing non-cancerous cells. The marrow is gathered from the donor's hip bone under sterile conditions. The donor is then observed as an inpatient for about twelve hours for pain, bleeding, and low blood counts.

Unfortunately, sometimes a donor cannot be found because of the patient's genetic makeup. There are six factors on which the marrow is tested to display a perfect match, and a transplant center will not transplant with a match less than five out of six of these genetic markers, due to the risk of rejection and recurrence of disease. For many patients, a bone marrow transplant can become a life or death matter because the conventional treatment methods of chemotherapy and radiation have failed to produce a remission for the patient. At this point, some families have chosen to conceive a baby for possible use as a donor. One such case was the family of Anissa Ayala. Anissa was a seventeen year old girl with chronic leukemia, who was dying because chemotherapy was not effective against her illness, and no bone marrow donor could be found. The lives of this family were invaded be ethicists who did not agree with the Ayala family's decision (Zucker, 1992).

Critics of the above scenario and any situation where a baby is born to save another person's life cite the injustice to the fetus as having only been conceived for a purpose and the inability of the fetus to weigh the benefit versus risk of being a donor.

As a representative of the Major Oncology Organization an organization which supports oncology educational and research efforts, I refute these critics and call on your support of the use of infant bone marrow for bone marrow transplantation. While the Major Oncology Organization does not encourage families to conceive a child solely for the purpose of being a donor, we do support the notion of building a life to save a life, where there will be love, respect and where the family's decision is based on education about the risks and benefits of having a newborn serve as a bone marrow donor. Furthermore, Major Oncology Organization believes that no legislation or policy should be brought forth to limit the use of newborns as bone marrow donors for the following reasons. First, couples have the legal right to conceive or abort without interference by the government. Second, the risks to the newborn in acting as a bone marrow donor are few and extremely rare. Third, the benefit to the dying patient is extremely great. Finally, parents have the right to consent for medical tests or procedures done on their child. Society does not have the right to limit parental consent when the risks to the newborn is statistically significant despite the expression of a competing belief. Currently, 30% of all bone marrow donors are under one year of age and have saved thousands of lives (Curtin, 1990).

I will be happy to answer any questions regarding this issue and I thank you for the opportunity to share the Major Oncology Organization's viewpoint. We encourage the use of infants as bone marrow donors and request that no policy be formulated which limits the use of infant bone marrow in bone marrow transplantation.

References

Curtin, L. (1990). A gift of many parts. Nursing Management, 21(6), 7-8.

Zucker, A. (1992). Baby marrow: Ethicists and privacy. Journal of Medical Ethics, 18, 125-127, 141.

03/10/03

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