Genetics Policy Forum
Summary of the June 28-29, 2002 Meeting
Prepared for: Genetic Services Branch, Maternal and Child Health Bureau, Health Resources and Services
Administration, Rockville, Maryland
Prepared by: Health Systems Research, Washington, DC. 15 July 2002
Table of Contents
- Introduction.
- Genetics in the Era of Preventive Medicine
- Open Forum
- Newborn Screening Systems
- Genomics and Public Health
- Discussion
- Fred Friendly Video Seminar
- Genetics Policy
- Group Discussion
- Case Scenarios
- Cystic Fibrosis
- Diabetes
- Employment
- Final Comments and Wrap-Up
- Appendix A: List of Participants
I. Introduction
Recognizing that the ability of public health to use genetics for effective, beneficial purposes will be influenced by the decisions of health policymakers, the Genetic Services Branch within the Health Resources and Services Administration (HRSA) has partnered with the Association for State and Territorial Health Officials (ASTHO) and the National Conference of State Legislatures (NCSL) to sponsor a series of forums designed to bring together State health officials and representatives from State legislatures and governors’ offices for an informational exchange on genetic policy. The second of these forums, held June 28-29, 2002 in Chicago, Illinois, allowed participants to discuss some of the social, ethical, and legal issues that accompany recent advances made in genetic science. (A list of participants is included in Appendix A.)
Representatives from each of the three sponsoring agencies—Marie Mann, M.D., M.P.H., Deputy Chief of the Genetic Services Branch; Alissa Johnson, M.A., Policy Associate with NCSL’s Genetic Technologies Project; and Amy Klein, M.P.H., Director of Genetics at ASTHO—greeted the participants and stressed the value of forums such as this to educate policymakers and senior State health officials about the advances in genetics. They reiterated the specific goals of the meeting, which were to help attendees:
- Identify health policy issues associated with recent genetic advances;
- Identify issues that may keep the public from participating in health care services that use genetics;
- Identify ways in which genetics is beneficial to health;
- Become familiar with health care financing issues for genetics; and
- Discuss potential efforts to address genetics policy issues with key policymakers from their own and other States.
II. Genetics in the Era of Preventive Medicine
Celia Kaye, M.D., Ph.D., Professor and Chair of the Department of Pediatrics within the University of Texas Health Science Center at San Antonio, started off the forum by offering participants a brief background on the Human Genome Project. The Human Genome Project was initiated in 1990, and it recently completed sequencing the human genome, or all the DNA in a human organism. The major implication of the project has been the integration of a new field of genetics, genomics, into the public health system. Unlike genetics, which studies patterns of inheritance and the actions of single genes, genomics studies multiple genes and their interactions with the environment. According to Dr. Kaye, genomic medicine promises to have a more wide-reaching effect on the general public because it:
- May predict rather than react to disease;
- May allow preventive measures to take place before the onset of the condition;
- May offer the ability to conduct much more screening across populations, sub-populations, and individuals; and
- May contribute to the science of pharmacogenomics, that is, prescribing drugs based on an individual’s genetic characteristics.
Dr. Kaye then reviewed the different types of screening currently used, and the genetic testing and technologies that accompany them. For example, prenatal genetics screening is driven by standards of care established by the American College of Obstetrics and Gynecology, and currently includes chorionic villus sampling (CVS), amniocentesis, fetal ultrasound, MSAFP (maternal serum alpha fetoprotein), and triple marker screening. Dr. Kaye highlighted some of the advantages and disadvantages of these tests, along with another test, preimplantation genetic diagnosis (PGD). PGD is used in in vitro pregnancies and may diagnose conditions such as MCAD deficiency, Tay-Sachs, and sickle cell disease. The risks associated with in vitro fertilization and this testing may preclude couples from utilizing PGD.
In addition to highlighting prenatal screening techniques, Dr. Kaye also described some of the genetics screening that has been carried out in adult populations. Prior to recent advances in genetics, screening of adults generally has been limited to determining whether a person is a carrier for disorders such as sickle cell disease, cystic fibrosis, and Tay-Sachs disease. The lessons learned from these screening procedures set the precedent for future screening in adult populations. For example, concerns about privacy began to be raised when some adults identified as carriers of sickle cell experienced genetic discrimination; and the many hundreds of different mutations that can lead to cystic fibrosis have shown that it is impossible to screen for every mutation that may cause disease.
With the new genomics, more screening of adults may occur to determine if they have a predisposition for adult-onset disorders, such as Alzheimer disease, hemochromatosis, Factor V Leiden, and maturity onset diabetes of the young. Genetic testing might also be used to understand the nature of manifestation of other illnesses, such as HIV and tuberculosis. Currently, the American Academy of Pediatrics recommends that it is inappropriate to screen children for adult-onset diseases when there is no effective intervention available in childhood. One challenge to screening adults, however, is identifying a venue for which screening can occur universally, as it does with newborn and school-age children.
Finally, Dr. Kaye highlighted some of the ethical, legal, and social issues that accompany testing for genetic conditions. She suggested that unanticipated information may arise from such testing, including misattribution of parentage and unexpected disease associations. She also noted that any collection of blood or tissue samples can constitute a DNA “database”, and Institutional Review Boards (IRBs) should oversee the usage of these samples beyond their original purpose. One group that has attempted to handle some of these ethical and social implications is the Secretary’s Advisory Committee on Genetic Testing (SACGT; disbanded in September 2002), which was chartered to advise the Secretary of the Department of Health and Human Services on issues related to the use of genetic tests. The SACGT conducted public outreach on genetic testing and recommended that the Food and Drug Administration serve as the lead agency to provide oversight of testing. The Committee also supports labeling of genetic tests, according to what scientists and health care practitioners know or do not know about what the test can determine.
Dr. Kaye reiterated that the Human Genome Project will change how we practice medicine, but legislators and public health officials must recognize and address the associated challenges. These include: educating professionals and the public about proper utilization of genetic information, and increasing the number of genetic professionals to meet the needs of the future.
III. Open Forum
Following Dr. Kaye’s presentation, the policymakers and senior State health officials identified several areas around which they sought more guidance regarding genetic policy issues in their localities. These included:
- Privacy issues. The majority of States identified the rights of privacy as one of their and their constituents’ overarching concerns. The question “Who controls the genetic information?” was raised by several participants, and most agreed that the parameters around the use of genetic data should be clearly defined before legislation is enacted.
- Costs. One State noted that it recently legislated additional newborn screening tests without an increase in funding to this program; the implications for supporting follow-up after such legislation has been enacted were identified as a concern in many States. Several participants also argued for a system in which funding should be channeled more into prevention (i.e., identifying genetic carriers before they become parents rather than adding more tests to newborn screening systems) than testing. However, given that the entities that pay for prevention don’t fund the treatment system, there is a need to bridge the disconnect between the two.
- Education. States wanted to see more education about genetics, both to the general public and the providers who care for them. Those predisposed to certain diseases must be informed about the environmental and lifestyle choices they can make that influence their health. Medical professionals also need to become more literate around genetic issues; many providers do not recognize that genetic screening is not a diagnostic tool, and that a genetic mutation in most cases only increases one’s risk for disease.
- Constraints of legislators. Short legislative sessions and term limits preclude many policymakers from understanding genetic issues in depth; therefore, legislation may be enacted based on limited knowledge. Legislators also have many interest groups vying to get their positions heard; having an ongoing commission on these issues would aid them in their decision-making around genetic issues.
IV. Newborn Screening Systems
To offer participants the opportunity to understand how genetic screening has operated until now, Dr. Kaye provided a brief history of newborn screening. Newborn screening was the first and most successful genetic screening. However, it is not without controversy. Issues that still plague newborn screening systems include funding, informed consent, and storage of samples.
Dr. Kaye emphasized the need to consider newborn screening as a system rather than a mere test, with components of screening, follow-up, diagnosis, management, and evaluation. The screening process begins shortly after a child is born, when identifying information is entered into the hospital medical record. Patient information is transferred to the nursery and a newborn screening test is ordered, to be performed before the newborn is discharged from the hospital. In newborn screening, a blood specimen is collected from a heelstick, sent to a testing laboratory, and the prescribed tests (according to State law) are performed. Resulting information is entered into a database, and test results are reported to the newborn’s physician. A follow-up coordinator associated with the screening program is responsible for ensuring that any newborn whose results indicate the possibility of a disorder receives confirmatory follow-up. More tests and evaluation by a subspecialist are required when screening results are abnormal. The workflow is similar in newborn hearing screening, which is being adopted and integrated in many States. A good follow-up system cannot be underestimated, Dr. Kaye stressed. Comprehensive systems do not actually exist in full without a system to assure quality of care for those babies identified as having genetic conditions, and many States are still not doing a good job of long-term assessment of the system.
One question that presents itself with newborn screening, and other child health programs, is whether individual health program data can be more efficiently shared to decrease duplication of effort, improve efficiency, and minimize errors. This is of particular concern in the newborn screening systems in which tests are performed during the newborn’s brief hospital stay. Such “data warehousing” might allow for the capture of general demographic information by whichever program encountered the patient first, and could be accessed and expanded by more programs as the child ages (e.g., immunization registry). However, Dr. Kaye cautioned that database sharing is not a simple matter. Many issues must be worked out, including ownership of the information, consent to share information, linkages between systems, security, and usage of universal identifiers.
Participants questioned Dr. Kaye about the latest technology used in newborn screening (tandem mass spectrometry) and its benefit to States. Dr. Kaye noted that States often find it easy to allocate funds toward the purchase of a tandem mass spectrometer, but they do not necessarily think about the funding that will be needed after the new technology is implemented. Having a core of professionals on hand to interpret results and provide follow-up measures is equally important.
V. Genomics and Public Health
Amy Klein of ASTHO offered the group additional information about the intersection of genomics and public health, highlighting a model developed by the Institute of Medicine (IOM). According to the IOM report The Future of Public Health, public health comprises three core functions—assessment, policy development, and assurance—and its mission is to fulfill society’s interest in assuring conditions in which people can be healthy. Ten essential public health services can be contained within the three core functions to create a framework for how to integrate genetics into public health:
- Monitoring health status;
- Diagnosing and investigating;
- Informing, educating, and empowering;
- Mobilizing community partnerships;
- Developing policies;
- Enforcing laws;
- Linking people to needed personal health services;
- Assuring a competent public health workforce;
- Evaluating; and
- Conducting research.
The intersection of genetics and public health in the past generally related only to rare diseases and single gene disorders, with public health activities centered around newborn screening services. A more contemporary model, however, sees greater penetration of genetics into all areas of public health. As the link between genetics and common diseases and environmental interactions becomes clearer, public health genetic activities will include greater consideration of chronic diseases, infectious diseases, environmental health, and epidemiology. Advances in the science also will offer more opportunities to:
- Define the role of genomics in public health activities and define the role for public health in genomics activities;
- Build on the excitement currently surrounding genomics;
- Build new collaborations with organizations and agencies that public health has not worked with much in the past; and
- Shape public policies around genomics issues.
In order to successfully translate genetic discoveries into accessible health services, public health agencies will need strong leaders and champions, genomics staff, an agency-wide work group, resources capacity, and collaborative partnerships. Having strong leadership and partners will allow public health to effectively address three continuing priorities: health promotion efforts, applied public health research, and laws and regulations. Policymakers can offer their support to public health by supporting legislation that enables individuals to access genetic services, working with health agency leaders regarding genetics-related bills, and attending conferences like these to obtain information on a range of issues related to genetics and health.
VI. Discussion
The participants weighed in on some of the key points of the presentations by highlighting three issues that continue to concern them. The first among these is the degree to which informed consent is needed in genetic screening. The complexity of this issue is exacerbated by some States having to specify in their legislation how much needs to be told to patients before they are tested. This becomes problematic because genetic information can reveal so much, and States do not know how to write legislation around that. A few participants felt that, ideally, some genetic screening (such as routine tests that may indicate a genetic condition, but not an actual DNA test) could be done without informed consent, the way newborn screening is conducted in many States, and the way certain other screening tools, such as blood pressure screening, are built in as a natural part of a physician’s visit. However, another attendee cautioned that there must be a distinction between newborn screening and other genetic programs, such as cardiology and cancer screening, because there is no established guideline for the clinical utility of certain genetic tests in newborn screening programs.
One of the key issues associated with informed consent is the education of the public around genetics issues. Despite the fact that there have been few cases of genetic discrimination, the general public expresses anxiety about the misuse of genetic information. Before going full speed ahead in integrating genomics and public health, the participants argued that more should be done to gain the confidence of the public around privacy issues. This can be done by educating consumers about genetic screening, and by educating the workforce about the impact screening has on people. The group also felt that there needed to be research on how people psychologically respond to being identified as having genetic predispositions for certain conditions; this was one reason they were against mandatory adult screening.
The participants also were opposed to mandatory screening of adult populations because of cost and access concerns. They questioned, how will quality of care be balanced across populations, especially among those who are uninsured, if the screening is based on insurance coverage? Moreover, how much can employers and individuals afford to pay once genetic testing begins to be included in the costs of insurance?
VII. Fred Friendly Video Seminar
Ruth Friendly of Fred Friendly Seminars introduced segments of a public television series that simulates real-life situations and uses skilled moderators to engage panelists with diverse points of view in a discussion about genetics issues. “Our Genes, Our Choices” is a three-part television series designed to engage the public in dialogue about the impacts of genetic technology. Ms. Friendly shared clips of the series with the State policymakers and public health officials, including “Who Gets to Know?”, a discussion surrounding whether a man with a family history of cancer should get tested for genetic markers that indicate his likelihood of getting cancer, and who should have access to his test results, given he holds a public office, and another clip regarding employers’ rights to require genetic testing during the hiring process. Ms. Friendly encouraged the group to access the series’ outreach materials, including a video teleconference on October 1, 2002, to continue to think about these issues.
VIII. Genetics Policy
Following the video presentation, several speakers offered their thoughts on some of the implications of new genetic science on public health policy. Cheye Calvo, Program Manager of the Employment and Insurance Program at NCSL, noted that genetics promises to revolutionize medicine, but there are vast public policy challenges that accompany advances in genetic technology. He also cautioned that genetic technology is still in its infancy, and may not yield significant benefits for decades. The advantages will depend largely upon how well genomics is integrated into the larger field of public health.
What makes genetics different from other fields of health is that it poses unique threats to civil liberties and the economy of health care. NCSL completed a study with the Georgetown University School of Law to examine employment and insurance discrimination arising out of genetic technology. What they found was that a) legislation was often initiated by a small group of lawmakers, and b) laws were often enacted based on misconceptions or sensational ideas about the use of genetic information. The difficulty for policymakers is that while the public believes genetic information is significantly different from other health data, scientists believe it is the same, and legislators are sometimes forced to bridge the gap between these two viewpoints.
Alissa Johnson of NCSL further iterated some of the problems with genetic privacy, which remains linked to the larger policy issue of health information privacy. At the Federal level, the Health Insurance Portability and Accountability Act (HIPAA) provides patients greater control over their medical information, but allows some exceptions to the limits on disclosure for public health agencies. State laws, while protecting the privacy of medical records, vary significantly from one another, with some States having genetic-specific privacy protections. Most State laws take an “exceptionalism” approach, meaning they treat genetic information differently from other medical information. Many States also focus more on the information itself rather than on its use or the user, and they take a variety of measures to safeguard that information.
Ms. Johnson noted that it is important to examine six components of genetic privacy legislation: exceptionalism, the definitions of what constitutes genetic information, property rights, users of genetic information, restrictions at various stages of the handling process, and appropriate exceptions. She observed that while it is important for States to respect the needs of individuals, policymakers also should recognize the effects privacy laws have on other social programs, including public health, law enforcement, and medical research.
The need to include consumers in the discussion of policymaking around genetic issues cannot be underestimated, according to Julie Beckett, a member of Family Voices and a parent of a special needs daughter. Family Voices was formed almost a decade ago as both a support group and an advocacy panel to bring together consumers’ opinions to move policy issues forward. Ms. Beckett noted that children with special needs are unique in that the process of handling their care has changed dramatically largely because of the way the health care system is financed. Family Voices works with the health insurance industry and Medicaid program to find ways to take better care of children.
Educated consumers play a pivotal role in the discussion because they can alert policymakers and health officials to some of the special issues faced by these families. Family Voices has attempted to rectify some of the inequities in care to children with special needs by supporting the Family Opportunity Act. Introduced in 2001, the Act would provide families of disabled children with the opportunity to purchase coverage under the Medicaid program for such children. The legislation also provides funding for the establishment of health information centers to assist and support families of children with special health care needs.
IX. Group Discussion
Following the second set of presentations, participants had many questions about the storage of genetic information, particularly bloodspots used in newborn screening programs. There are several positive uses for long-term storage of genetic information derived from bloodspots, including:
- They can be useful to law enforcement;
- In the event of a child’s death, parents can retrospectively assess whether the death was of a genetic etiology and make informed future reproductive decisions; and
- They can be used in population surveys to see whether conditions are genetically or environmentally influenced.
Some States keep bloodspots for a long period of time for liability issues, while others have no specific rules about the length of time information is kept. There also is debate in some States regarding the ownership of the bloodspots; it is generally accepted that individuals do not own the sample, but do retain rights to the information derived from the sample.
Finally, the participants emphasized the need to not forget the impact that legislation has on the health professions. We cannot separate the issue of informed consent from doctors’ concerns, and the costs associated with it; medical liability must also be discussed in addition to the science.
X. Case Scenarios
The latter half of the forum offered the participants the opportunity to utilize some of the information and approaches they had acquired earlier to determine how to handle potential situations that may arise regarding genetic public policy in their States. In this session, the participants were divided into three groups and given different case scenarios and asked how they would answer a series of questions around each scenario. Described below are their responses to these cases.
A. Cystic Fibrosis
This scenario revolved around guidance recently released regarding screening for cystic fibrosis, a genetic disorder with sometimes lethal outcomes. Pediatricians are discussing screening newborns for the disease, and several laboratories are offering a test for a relatively low cost. State legislators in the fictitious State, New Prospect, are enthusiastic about screening infants but want more information about screening parents as potential carriers. The participants in this scenario group were asked to consider:
What are the rules and regulations governing New Prospect’s newborn screening program? How does New Prospect decide what conditions to screen for? How is the program supported—through fees, through billing? Does the program have an advisory committee? Does this committee reflect the community it represents? Does it include consumers? What kind of resources might the local communities in New Prospect need to provide genetic service resources to individuals detected by this screening test? Should medical services and genetic counseling be a part of the screening process? What are the implications of all the aspects of this genetic testing on privacy, disability insurance, job discrimination, health and life insurance? How could health officials learn more about the validity/reliability of the genetic tests for cystic fibrosis, and is this information that the Department of Health might be able to provide? Would the Department of Health be inclined to add cystic fibrosis to the list of diseases and conditions to be tested for? Why or why not? What would be the process for reaching this decision?
The group started off by addressing the question, “What difference would cystic fibrosis screening make?” They agreed that screening should only be conducted when four considerations can be met:
- Screening impacts the quality of life or saves lives;
- Screening speeds the diagnosis process and possibly removes stress resulting from fear of the unknown;
- It offers minimal false positives; and
- Localities have the capacity for ongoing follow-up and evaluation.
To help legislators find information to determine whether screening is appropriate, the participants recommended establishing an advisory committee of experts and consumers.
In the absence of an advisory group, policymakers could go to the health department for information, though some participants noted that the health department may not have access to up-to-date, state-of-the-science information.
The group also identified several key issues that must factor into the decision to include the test in the screening program: cost, the driving forces making the test, and whether an evaluation of the program exists.
B. Diabetes
This scenario centered around a biotechnology company promoting a test that predicts whether people may be likely to develop diabetes type 1. Parents’ groups and others are interested in getting the test added to the newborn screening panel, but so far little is known about the test’s sensitivity and specificity. The company marketing the test asks that Medicaid and other health insurance plans cover its cost, which is considered almost insignificant compared to the millions spent on unnecessary doctors’ visits related to undiagnosed cases.
Key questions that the participants in this session were asked to consider included:
Should a test that is predictive, not diagnostic, be included in newborn screening? Should the Department of Health be responsible for providing any new tests such as the type 1 diabetes test, or should this be an individual health care decision? Should health plans be mandated to provide coverage for the genetic test? Why/why not? Where could you learn more about the validity/reliability and cost of the genetic test other than the company promoting it? What is the role, if any, of the health department, the State legislature, and the governor’s office in addressing this issue? What public health workforce issues (e.g., training and continuing education) exist in relation to genetic testing and population-based genetic testing? What resources might be necessary to manage these workforce issues? What actions might the State take to ensure the sensitivity, specificity, and utility of the test? What are the implications of genetic testing on privacy, disability insurance, job discrimination, health and life insurance? What other policy/resource implications does this scenario raise?
Members of this breakout session chose to frame their responses around two major questions that arose in their discussion. The first was whether this is the “right” test and the right time to use it. They decided that legislators would need more information about the reliability of the test, and a clearer understanding of whether it is predictive or diagnostic. There is no confirmatory test to prove a person will have diabetes type 1, nor does the State health department always have the resources to help legislators make a decision about a particular test. The group asked what level of responsibility public health should have in this matter and whether cost benefit analysis should be part of any decision to include a disease in the newborn screening panel.
The group also wanted to know the impact the test would have on families. Because there is no specific intervention available at this point, the only role families can play is to monitor their children’s health closely. But who pays for the monitoring and tracking is another consideration. The participants also questioned how false positives would affect families.
Finally, they identified several other issues that would need to be studied before making any legislative decision to include the test in newborn screening in the State. These included: whether people at various socio-economic levels would have equal access to the test and follow-up if the test is not covered by Medicaid; and whether the results of the test would possibly affect a child’s ability to get certain types of health insurance.
C. Employment
This scenario envisioned a State legislator being notified of possible job discrimination by a metal manufacturing plant known to have tested employees for a genetic predisposition to a form of cancer associated with exposure to toxic substances used at the plant. Employees at the plant were compelled to submit to testing, but were largely unaware of the potential implications of the results of the tests. One constituent is concerned he was denied employment based on his test results. The Department of Health also notifies the legislator that the laboratory conducting the tests for the plant is operating without a permit or State approval of the test. Participants in this scenario were asked to discuss the following:
Did the employer have a legal right to require applicants to undergo genetic testing based on U.S. and State laws? What laws would the legislator need to examine in order to answer this question? What are the privacy issues involved? Does the testing of applicants benefit the employer, the applicant, or current employees? Following her legal research, what follow-up questions might the legislator have for her constituent or employees of the plant? Based on State laws, would the Department of Health find that the laboratory in question was guilty of any wrongdoing? How could health officials learn more about the validity/reliability of the genetic test used by the laboratory, and is this information that the Department of Health might be able to provide? If the laboratory had applied for approval to conduct this test, would the Department of Health have approved it? Why/why not? What might be the potential consequences of this scenario for the employer, the laboratory, current employees, and applicants who were denied employment?
Participants in this scenario group touched upon several issues that would need to be discussed and clarified before making decisions about the testing. The first of these issues were legal in nature. They wanted to know the liability of an employer to tell/not tell an employee both about the potential hazards of the work environment and the results of the genetic testing. They also inquired whether an employee would need to have an attorney look at an employment contract or consent form before undergoing genetic testing for a job. Referring back to the Fred Friendly video, they discussed the implications of how genetic testing was/was not similar to taking psychological profiling tests for certain careers. Finally, they wondered what options both employers and employees would have if the results violated equal opportunity employment laws, for example, if the plant were in an economically depressed area or if employees worked in a very specialized field and needed the job.
Scientifically, they wanted to understand the reliability of the genetic marker. What happens if the plant refuses employment to a person who ends up with a false positive? Participants also wanted to know who has access to the information, how will it be stored, and what happens if the company is bought out by another firm. With these considerations, the group came to the consensus that ultimately, legislators need to continually review their actions, and be proactive in seeking out information, rather than reactive as situations arise.
XI. Final Comments and Wrap-Up
Participants raised several other points following the scenario discussions. The first among these was the need to build up a genetics workforce. There is a lack of genetics professionals across States, and genetic counselor licensing is a contentious issue. Even more of an issue than licensure is reimbursement. Professionals providing genetic services prefer direct reimbursement rather than payment through physicians, and this was noted as a possible deterrent to generating a larger genetics workforce. But the group also asked the question, how do we balance out the cost of direct reimbursement to insurance companies?
Another concern of the group was changing demographics across States. Several participants also noted the challenge of introducing genetic testing that is sensitive to different populations’ belief systems. They suggested it would be helpful for resource persons to consider how to help States address these changing demographics, and to coordinate national efforts to develop materials to offer guidance to States in this area.
Finally, the group questioned what Federal action was occurring around genetics. They were informed that the only measures coming out of Congress on genetic issues are more related to issues of discrimination and civil liberties, rather than screening and privacy concerns. Moreover, there was the sense that the Federal level was even further behind State lawmakers as far as understanding these issues.
Dr. Mann noted that one place States can turn to for a better understanding of genetics issues is the National Newborn Screening and Genetics Resource Center (NNSGRC). The NNSGRC (online at http://genes-r-us.uthscsa.edu) is a cooperative agreement between the Genetic Services Branch and the University of Texas Health Science Center at San Antonio, and provides information and resources in the area of newborn screening and genetics to benefit health professionals, the public health community, consumers and government officials.
Ms. Klein and Ms. Johnson also thanked the legislators and State Health Officials for coming to the forum, and stressed the importance of opportunities like these to talk about what States have learned around genetics. They offered two other resources for the participants:
- The NCSL’s site for information on legislative activity: www.ncsl.org/programs/health/genetics/charts.htm; and
- ASTHO’s Genetics Advisory Committee site: http://www.astho.org/?template=genetics.html (URL changed in September 2002).
Appendix A: List of Participants
Illinois
The Honorable Mary Flowers, Representative, Illinois House of Representatives
Susan Marantz, M.D., Medical Director, Bureau of Medical Programs, Illinois Department of Public Health
Indiana
The Honorable Marvin Riegsecker, R.Ph. , Senator , General Assembly, Indiana State Senate
Greg Wilson, M.D., State Health Commissioner, Chair, ASTHO Genetics Advisory Committee, Indiana State Department of Health
Iowa
Tonya Norvell Diehn, M.S., State Coordinator for Genetic Services Center for Genetics Community Health Division, Iowa Department of Public Health
Massachusetts
The Honorable Harriett L. Stanley, Representative , Commonwealth of Massachusetts
Minnesota
The Honorable William G. Haas, Jr., Representative, Minnesota House of Representatives
Missouri
The Honorable Joan Barry, R.N., Representative , Missouri House of Representatives
Patrick Lynn, Senior Policy Advisor, Missouri Governor's Office
Tricia Schlechte, M.P.H., Deputy Director, Director's Office, Health and Public Health Division, Missouri Department of Health and Senior Services
The Honorable Marvin Singleton, M.D., Senator
New Hampshire
Joan H. Ascheim, Chief, Family and Community Health, Bureau of Maternal and Child Health
The Honorable Peter L. Batula, Representative, Chairman, Health, Human Services and Elderly Affairs Committee
Jennifer Wierwille Norton, M.P.P., Policy Advisor, Office of the Governor, State House
The Honorable Russell Prescott, P.E., Senator, New Hampshire Senate
South Dakota
The Honorable Kenneth D. Albers, Senator, Chairman, Health and Human Services Committee, South Dakota Legislature
The Honorable Burdette Solum, Representative, South Dakota Legislature
Presenters
Julie Beckett, M.A., National Policy Director, Family Voices
Cheye M. Calvo, Program Manager, Employment and Insurance Program, National Conference of State Legislatures
Ruth W. Friendly, M.A., Vice President, Fred Friendly Seminars
Alissa L. Johnson, M.A., Policy Associate, Genetic Technologies Project, Health Care Program, National Conference of State Legislatures
Celia I. Kaye, M.D., Ph.D., Vice Dean, Professor and Chair, Department of Pediatrics, School of Medicine, The University of Texas Health Science, Center at San Antonio
Amy E. Klein, M.P.H., Director, Genetics, Association of State and Territorial Health Officials
Resource Staff
Janice Bach, M.S., C.G.C., Public Health Consultant, State Genetics Coordinator, Hereditary Disorders Program, Epidemiology Services, Michigan Department of Community Health
Timothy G. Baker, Deputy Director, Office of Genomics and Disease Prevention, National Center for Environmental Health, Centers for Disease Control and Prevention, U.S. Department of Health and Human Services
LaDene Larsen, R.N., Chronic Disease Director, Bureau of Health Promotion, Utah Department of Health
Observer
Michelle Prince, Outreach Director, Fred Friendly Seminars, Columbia University, Graduate School of Journalism
Staff
Marie Y. Mann, M.D., M.P.H., Deputy Chief, Genetic Services Branch, Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services
Laura A. Sternesky, M.P.A., Policy Analyst, Genetics, Association of State and Territorial Health Officials
Other Staff
Brandy Bauer, Writer, Health Systems Research, Inc.,
Martrell Kelly, Meetings Assistant, Conference and Project Management, Health Systems Research, Inc.