Health and Human Services Interim Committee

genetic information; (2) legislative framework for regulating information; and (3) specific areas, particularly health, life, and long-term care insurance and employment.

    Mr. Rothstein stated that it is essential to identify the public policy interests to be served by any new legislation or other policy initiatives. Some of the key policy goals underlying the protection of genetic information include: (1) preventing at-risk individuals who want to undergo genetic testing from being dissuaded from doing so because of a fear that the information generated by the tests may be used to their detriment; (2) preventing individuals from being coerced into genetic testing; (3) preserving the quality of genetic testing and counseling; (4) conserving medical resources; (5) avoiding unnecessary interference with genetic research and treatment; (6) preventing the stigmatization of individuals; (7) preserving essential relationships; (8) preventing irrational discrimination based on erroneous information ; (9) promoting equality of opportunity; and (10) avoiding unpredictable secondary consequences.

    Mr. Rothstein next discussed whether new legislative initiatives should: (1) be enacted at the federal or state level; (2) be genetic specific or generic law ; (3) regulate access to information or use of information; and (4) prohibit unauthorized or delineate authorized disclosure of information. He recommended an access law rather than a use law, where possible. He then discussed issues concerning health, life, and long-term care insurance and employment. Mr. Rothstein said current state legislation is inadequate because the law covers individuals only when they are asymptomatic. He said the Health Insurance Portability and Accountability Act (1996) and the recent Utah legislation have made strides in the health insurance area. He identified and discussed the following public policy interests underlying life insurance: (1) procedural fairness; (2) confidentiality; and (3) financial security. He reviewed the legislative activities in other states. Mr. Rothstein predicted that private long-term care insurance will become increasingly important because it is financed by medicaid and the population is aging. He also reported that 12 states have enacted legislation prohibiting discrimination in employment on the basis of genetic test results. However, discrimination can still be based on family health histories. He suggested legislation that states that all medical examinations must be limited to only those things that bear on the ability of the individual to perform the job. Minnesota has had such a law since 1983. Mr. Rothstein then answered questions from the committee.

    Dr. Stepahanie Hallam, University of Utah Genetic Diagnostic Lab, commented that Utah legislation may also need to take into account out of state samples. Mr. Patrick Johnson, Utah Health Policy Commission, asked about the impact of genetic testing on health care costs. Mr. Rothstein's responded that new genetic testing technology will probably not save money for the health care system. Chair Tanner thanked Mr. Rothstein for his presentation.

    Mr. J. Christopher Jankowski and Dr. Steven Zimmerman , both with the American Council of Life Insurers, distributed Risk Classification and Life, Long-Term Care & Disability Income Insurance. Dr. Zimmerman presented issues of concern to life, disability income, and long-term care insurance companies. He said insurance companies' ability to gather accurate

information or have access to information is a key component in the process of risk classification. Dr. Zimmerman then reviewed the proposed legislation titled Utah Genetic Privacy Act, including sections on definitions, restrictions on actions taken by insurers, required disclosure authorization, informed consent for and disclosures of genetic tests, individual access to genetic test information, and prohibition on the redisclosure of genetic information. Chair Tanner thanked Mr. Jankowski and Dr. Zimmerman for their presentations.

    MOTION: Rep. Stephens moved that at the next Health and Human Services Interim Committee meeting where genetic testing is scheduled, the committee hear from the Genetics Advisory Council with their response to H.B. 271; that staff prepare a redraft of H.B. 271, for committee consideration, which reflects the testimony and recommendations that have been presented to the committee; and that committee members apprize staff or the chairs of any concerns or recommendations regarding possible legislation. The motion passed unanimously. Rep. Davis and Rep. Short were absent for the vote.

3.    Individual and Small Group Health Insurance Reform
    Mr. Andrews presented information found in the handout Individual and Small Group Insurance Reform. He stated that the presence of the Utah Comprehensive Health Insurance Pool (HIP) appears to have resulted in holding down premiums in the individual market. He reminded the committee that at previous meetings both the Health Policy Commission and the Insurance Department recommended postponing further changes to the insurance system and allow the health insurance system to sort itself out. Mr. Andrews added that the Insurance Commissioner indicated that he is meeting with carriers and is trying to develop ideas for improving the system over the long run. He noted that data is presented to the committee to provide a preliminary sense about how various participants in the insurance system are being affected by and are responding to recent changes.

    Ms. Joan Ogden, Joan Ogden Actuaries, distributed the handouts Impacts of Health Reform on Individual and Small Group Insurance Markets and Estimated Average Percent of Cost Increase Due to Reform. She addressed the committee regarding the impact of state and federal insurance reforms on individuals, employers, health care providers, and insurance providers in the following areas: (1) effect of sick individuals on total cost; (2) change in claim costs; (3) enrollment; and (4) estimated average percent of cost due to reform. Ms. Ogden reviewed the impact of the changes in pre-existing condition coverage on employers due to state reform in 1996. She explained that in 1997, small employer premium rates increased by an average of 12.2 percent due to the enrollment of previously declined groups and the coverage of pre-existing conditions, while large employer rates increased at a rate of 4-5 percent per year. She explained that some individuals may have been disadvantaged by reform because some employers have responded to increasing costs by reducing benefits, transferring premium costs to employees, or terminating coverage to reduce the impact of premium rate increases.

    Mr. Larry Bunkall, Utah Manufacturers Association, distributed Impact of Health Insurance Reform in Utah which addresses the impact of health insurance reform on individual and small group markets in Utah. He commented that because of mandatory open enrollment passed in the 1996 session, small employers in Utah experienced a 15 percent premium increase in July 1997 and have been warned of a similar increase in July 1998 for a total increase of 28-36 percent. He stated that for small employers, mandated benefits results in less coverage. Mr. Bunkall said employers should be free to design and offer the best benefits they can afford. He urged the committee to make changes thoughtfully and slowly, and to use free market methods.

    Mr. Jim Olsen, Utah Food Industry Association, reported that after fifty years in business, the association's health insurance plan is bankrupt as a result of increased health care costs over the last 1 ½ years due to guaranteed enrollment.

    Mr. Ron Casper, National Federation of Independent Business (NFIB), distributed the handout Issues of Small Businesses and Health Insurance Purchase and reviewed the following problems that small business face in providing health insurance to their employees. First, the tax code is so complicated that it is a disincentive to self insurers. Second, the health insurance underwriting discourages small businesses from purchasing insurance. Third, the health insurance alliance legislation has not provided the same reduction in brokerage fees that large businesses enjoy. Fourth, mandates in health coverage take away choice of coverage and allows the state to determine the level of health insurance coverage rather than the purchaser. He reviewed the results of a NFIB survey.

     MOTION: Chair Stephens moved to request that the Health Policy Commission and the Insurance Department each submit any recommended statutory changes that they feel need to be addressed by the Legislature, which may include the recommendation that no changes be made. Chair Tanner spoke against making any further changes at this time. Rep. Killpack recommended that insurance fraud be investigated.

     SUBSTITUTE MOTION: Rep. Carlson moved to request that the Health Policy Commission and the Insurance Department report to the Health and Human Services Interim Committee before the 1999 session. The motion passed with Chair Tanner and Rep. Dayton voting in opposition.

4.    Other Business - No other business was discussed.

5.    Adjournment--

     MOTION: Rep. Short moved to adjourn the meeting at 5:00 p.m. The motion passed unanimously.