home > resources > archive ACLU Reporter: Fall 1998 Table of Contents: The Genetic Testing Privacy Act: A First Step towards Medical Privacy A Troubling Trend in Public Policy - The Privatization of Utah Prisons Case Update: Foote v. Spiegel ACLU of Utah Supports Freedom of Speech for Conservative Republicans Brian Barnard and the ACLU of Utah File a Lawsuit on Behalf of Petitioners Intern Report _________________________ The Genetic Testing Privacy Act: A First Step towards Medical Privacy By Adam Richardson The American Civil Liberties Union has always advocated for laws that maintain the privacy of an individual’s medical information. The national workplace rights project has fought for strong legislation prohibiting employers from gaining access to any employee medical information that is not strictly job related. And recently, a nationwide ACLU privacy campaign drew attention to the ways in which medical information can be inappropriately accessed and shared between different medical and governmental agencies. Unfortunately, general medical privacy legislation has had a difficult time passing at both the state and federal level. For example, Utah Senator Bennett’s proposed legislation, The Medical Information Protection Act of 1998, has been debated for over two years and still has not reached the Senate floor. Lawmakers have instead found much greater success with medical privacy laws that specifically protect genetic information, and the ACLU views these laws as an important first step to achieving general medical privacy. Genetic testing, or the collection and analysis of an individual’s DNA, allows medical researchers to draw conclusions about aspects of the individual. These are often physical characteristics, but increasingly common are projected mental and emotional aspects as well (i.e. the "shyness" gene). Currently, one of the most important areas of scientific research is the identification of genetic markers of disease. Carrying a certain gene or genetic mutation may be an indicator that an individual is at a higher risk for a certain disease, or is more susceptible to certain illnesses. It is important to note that in many cases, these markers indicate only an increased probability that an individual will develop an illness. As with most technology, genetic testing has the potential to be both helpful and harmful. Knowing they carry a genetic disease marker may allow a person to make changes in their lifestyle or consider more extensive preventative treatment in order to avoid potential illness. Someday, possibly soon, we may have cures for genetic diseases such as Alzheimer’s and Huntington’s. And when the goal is to develop these cures, it is difficult to object to genetic technology. Some of the best genetic research in the world is occurring at the University of Utah and in Utah’s biotech companies, and if genetic researchers are to achieve their goals of helping people with genetic diseases, then they need to work with large pools of gene donors. However, the same knowledge may be used to other ends. Currently, employers and health insurance companies have the same access to genetic test results as they have to any other medical information. This information could be, and has been, used to avoid hiring or even to fire employees who may require potentially costly health care in the future. These are healthy, asymptomatic individuals who are adequately performing their jobs, but are terminated due to an increased risk for a disease. Insurance companies are similarly able to use genetic information to reject applications for health insurance, or to charge these individuals higher rates. Someday the knowledge that one is carrying a genetic disease marker may simply mean taking the cure. In the interim however, this knowledge is able to work either for or against individuals. It is society’s loss if people avoid genetic testing which could improve their health, because of a fear of negative repercussions from either their employer or health insurer. Or if these same fears discourage individuals from participating in research that attempts to find cures for diseases with genetic markers. Current laws are inadequate. While the Americans with Disabilities Act (ADA) prohibits employment discrimination once a disease with genetic origins manifests itself, it is not at all clear whether it applies to those individuals who have a genetic marker but are healthy. Also, the ADA does not prevent employers from gaining access to genetic test results through legal access to an employee’s medical records. Once this information is known, an employer may find a reason to fire or not hire an individual without violating the ADA. Other areas of ambiguity include discrimination based on a blood relative’s genetic test or on the fact that an employee’s dependent carries a disease marker and may some day require company-covered medical care. In Utah, State Representative Nora Stephens (R-Sunset) introduced House Bill 271, the Genetic Testing Privacy Act, to the interim Health and Human Services Committee as an attempt to correct some of these problems. Still in draft form, its major goals are to: 1) promote genetic research while protecting the privacy of DNA donors; 2) require informed consent before an individual donates an identifiable DNA sample; 3) prohibit employers from using genetic information except in certain court-certified situations; and 4) prohibit health insurance companies from requiring genetic tests, unless those tests are needed to process the applicant’s health claims. The Health and Human Services Committee is working on a final draft of the legislation for the 1999 session. The Genetic Testing Privacy Act creates much needed boundaries around genetic testing, allowing individuals to make informed health decisions and protecting them from potential abuses by employers and health insurance companies. If passed, this legislation will have a positive impact on all individuals who must make the complex and difficult decision to undergo genetic testing. Adam Richardson is an ACLU member, and is currently in the postdoctoral program in Medicinal Chemistry at the University of Utah. For additional information about the Genetic Testing Privacy Act, or about proposed federal medical privacy laws, please contact the ACLU of Utah at (801) 521-9862 or check out the national ACLU web page at www.aclu.org. _________________________ A Troubling Trend in Public Policy – The Privatization of Utah Prisons By Carol Gnade, Executive Director During the 1998 session, the Utah State Legislature approved the building of a new private correctional facility that will likely open in the next two years. Their reasoning for such a measure is that prisons and jails run by for-profit, private companies will both relieve our overcrowded correctional facilities and save the state money. Like many other states, Utah is looking to private companies for a quick fix to the extremely complex issues of punishment and rehabilitation. While the ACLU acknowledges that prisons everywhere are overcrowded and that the cost of corrections is skyrocketing, we do not believe that privatization is the answer to this problem. Incarceration, or the deprivation of physical freedom, is the most severe interference with liberty that the state can impose. Therefore, it is particularly troubling when the government chooses to contract that immense responsibility out to a private company. By definition, the goal of private enterprise is to earn profits, and the government is therefore creating a financial incentive for locking people up and keeping them incarcerated. It is not privatization by itself that causes us concern. Traditionally, private providers have operated many correctional facilities, such as halfway houses and drug and alcohol abuse programs. However, these organizations have been non-profit. It is the integration of profit-making and corrections that is new, and it causes civil libertarians a tremendous amount of alarm. Corporations that can influence legislation about sentencing and inmate programs are the new concern. In other states, for example, lobbyists for private prison corporations are asking for enhanced and longer sentences, are opposing costly incentive programs such as good time statutes, and they are requesting more prisoners to fill their beds and their pockets. In addition, in states that have private prisons and jails, taxpayer savings have been substantially less than promised. It remains unclear to whom these private companies are accountable or who ensures that inmates are housed in a reasonable and safe environment. The ACLU of Utah is therefore working to put some safeguards in state monitoring policies before the opening of our newest private correctional facility. It is of utmost importance that the bottom line doesn’t compromise inmates’ right to be free from cruel and unusual punishment. _________________________ Case Update: Foote v. Spiegel By W. Andrew McCullough, Attorney The American Civil Liberties Union has long been concerned about "profile stops," where law enforcement officers stop and detain motorists because their appearance conforms to a certain drug carrier profile. Profiling sets a dangerous precedent, as it can lead to the harassment of individuals based on their race, their age, or even on the type of car they drive. One such case currently on the ACLU of Utah docket is Foote v. Spiegel. The complaint claims that such a stop led to the violation of both the Americans with Disabilities Act (ADA) and the plaintiff’s Fourth Amendment rights. On May 8, 1994, Kristin Foote was driving through Davis County with her six-year-old daughter and her boyfriend on her way to a Mother’s Day picnic. Foote suffers from a mild form of cerebral palsy, which leaves her speech slightly thick and slow. She also has some muscle weakness that sometimes causes a slight shake and minor balance problems. Foote’s boyfriend had long hair, almost to his waist, and was wearing a tank top that showed noticeable tattoos on his arms. Foote was driving a recently purchased car that had a temporary sticker in the rear passenger window. Utah Highway Patrolman Robert Howe was on his way home from duty, and was in front of Foote, traveling in the same direction. In his rear-view mirror, he claims to have noticed the lack of front license plate, and so he dropped back on the passenger side to take a look. Having examined the passenger, he dropped behind Foote, and pulled her over to take a look at her sticker. Despite the fact that the sticker was fine, he immediately approached the passenger and asked for identification. After a few words with Foote, he decided that she was "not all there," and, suspecting marijuana intoxication, he asked her to take a field-sobriety test. He then called Officer Roger Spiegel, a so-called Drug Recognition Expert, to confirm that Foote was driving under the influence of marijuana. Officer Spiegel did so, despite the fact that his observations did not correlate to standardized observations of marijuana intoxication. Officer Spiegel then placed Foote under arrest for driving under the influence of marijuana, and unsuccessfully searched both her car and boyfriend for the marijuana. At the Davis County Jail, Officer Spiegel requested that Foote be strip-searched, purportedly believing that perhaps she had secreted marijuana in a body cavity. The search was done by a female attendant. On August 1, 1995, the ACLU of Utah filed a legal action on behalf of Foote, seeking damages for violation of her Fourth Amendment rights to be free from unreasonable searches and seizures. The action was also an attempt to force the Utah Highway Patrol and the Davis County Jail to conform to Fourth Amendment requirements regarding legitimate stops, seizures, arrests, and searches for drugs. The legal action was later amended to include a claim under the ADA for failing to train police officers to differentiate between marijuana intoxication and a disability. The District Court granted summary judgment against both the highway patrol officers and the Davis County Jail on the issue of the illegal strip-search. The State Highway Patrol appealed the summary judgment to the 10th Circuit Court in Denver, and the judgment was affirmed. In addition, three summary judgment motions by the defendants to eliminate the ADA action have failed. The case is now set for trial in February, 1999. It has already been determined that both the highway patrol officers and the Davis County Jail are liable to Foote for injuries arising from the illegal strip-search. Remaining issues to be decided in Court are the legality of the initial stop, the legality of the detention, and the failure of both the state and county to comply with ADA regulations. Stephen Clark, ACLU of Utah Legal Director, Lauren Barros of the Disability Law Center, and I are representing Foote in this case. As a result of our legal action, Davis County has rewritten its policies and procedures to prohibit strip-searching of minor offenders who are booked and released, and who never spend time as inmates at the jail. This is a substantial victory for individual rights in itself, and a part of what needs to be accomplished in prohibiting police officers from detaining people based on their appearance. W. Andrew McCullough is an attorney in private practice in Orem. A long-time board member of the American Civil Liberties Union of Utah, he has served as a cooperating attorney on several ACLU cases dealing with First and Fourth Amendment violations. _________________________ ACLU of Utah Supports Freedom of Speech for Conservative Republicans By Matthew Hilton, Attorney Early on April 13, 1998, Tom Draschil, the co-founder of the Utah Republican Assembly, arrived at the lobby of the Salt Palace to promote conservative ideas at the Republican County Convention. Several others joined Draschil, including Ruth Hernandez Robinson, a delegate to the convention. Without seeking access to any pre-convention caucuses, Draschil and other members of the Utah Republican Assembly exercised their free speech rights and sought to influence those arriving. Seven deputies from the Salt Lake County Sheriff’s Office were there, and, according to a police report, they had been asked the day before to come early to prevent such efforts. The group’s appeals to the convention authorities to protect their speech rights fell on deaf ears. Eventually, Draschil was arrested, booked, and prosecuted for trespassing and disturbing the peace. Robinson was booked and charged with trespassing. On July 13, 1998, a wide spectrum of persons heard oral arguments before Judge Sheila McCleve seeking dismissal of the charges. Along with the media, ACLU of Utah staff and long-term conservative protagonists were present to support Draschil and Robinson. Following Utah appellate precedent, the disturbance of the peace charges of "creating inconvenience, annoyance, or alarm" were dismissed as being over-broad and including a significant amount of constitutionally protected conduct in the prohibition. The trespass charges were defended by showing that the property was open to the public, and that the defendants’ conduct did not substantially interfere with the use of the property. The facts in the police reports all but conceded the lack of substantial interference, and five arguments were cited to justify why the convention was open to the public: 1.Draschil had attended before when he was not a Salt Lake County resident, and Robinson was a delegate. 2.Salt Palace management rules allowing for exclusion without cause were overridden by county policies. 3.Salt Palace management rules allowing for exclusion without cause were overridden by the Utah Constitution. 4.Salt Lake County’s subsidization of the Republican Party’s use of the convention space created a limited public forum under federal law and allowed the Utah Republican Assembly’s presence. 5.Exclusion without cause violated the provisions of the federal Constitution. Without stating which argument she relied on, Judge McCleve dismissed the trespass charges. The end result of the suit was that the charges against Draschil and Robinson were dismissed; the Utah Republican Assembly was able to publicize their conservative perspectives; and the ACLU continued its unbroken tradition of supporting free and open speech, regardless of the ideas expressed. Hopefully, civil rights litigation arising from this incident will lead to greater clarification of Utah’s constitutional laws regarding free speech and the protection of the rights of all. Matthew Hilton, attorney, has been active in many civil rights issues in the courts and the legislature, although at times, he represents a view in opposition to the ACLU’s position. He has been a participating attorney for the Rutherford Institute, and is currently the Vice-Chairman of the Constitutional Law Committee of the Inter-American Bar Association. The ACLU of Utah looks forward to working with counsel for Tom Draschil or Ruth Hernandez Robinson if the decision is made to file a complaint against Salt Lake County for their free speech violations. _________________________ Brian Barnard and the ACLU of Utah File a Lawsuit on Behalf of Petitioners On September 14, the American Civil Liberties Union of Utah and Brian Barnard, civil rights attorney, filed a lawsuit on behalf of John Slevin against the Utah State Fair Corporation. A few days earlier, State Fair authorities had Slevin arrested on trespassing charges for circulating a petition to fair-goers, and although he had been careful to restrict his activities to the parking lot, fair authorities maintain that Slevin was on private property. Almost a month earlier, Slevin and his partner John Guido had a similar experience at the Salt Lake County Fair, where they were cited for trespassing. In both instances, officials demanded that Slevin purchase space at the fairs at a cost of $350 to $400. After the ACLU of Utah and Barnard threatened a lawsuit, Salt Lake County lawyers agreed to allow the two men to continue their petitioning efforts at the County Fair. The Utah State Fair Corporation, however, maintains that its actions are legal, despite the fact that the nonprofit organization was established by the legislature and is subsidized with public money. The First Amendment explicitly grants the right to "petition the Government for a redress of grievances," and it is particularly disturbing when that right depends upon one’s ability to pay a substantial registration fee. The irony of this lawsuit is that Slevin and Guido, who are both paid petitioners for a national company called National Voter Outreach, were soliciting signatures for a referendum that would send legislation making English Utah’s official language directly to the House floor during the 1999 legislative session. Last session, the ACLU of Utah opposed the bill because of our concerns that if passed, it would violate the due process and Equal Protection rights of Utahns who are not yet proficient in English. Working with a coalition of individuals and organizations, we successfully lobbied against the proposed legislation, which never made it out of committee. If Slevin is successful in getting 37,000 signatures by November 15, then we will once again have to fight against this unconstitutional legislation. Explaining the importance of this lawsuit, Brian Barnard, a Gemini, said, "We must look at the process separately from the legislation proposed. The democratic process and the initiative petition process are to be protected. We stand up for the right of all people to participate in grassroots democracy; we protect the right to propose even offensive legislation or ideas. If it were against the law to propose stupid laws, the Utah legislature would have been out of business long ago. We trust in the democratic process. We allow all ideas to be expressed and any laws to be proposed. Debate and discussion will follow. In that vital exchange and in that marketplace of ideas, the best ideas will ultimately survive." In exhibiting a strong commitment to the First Amendment, the ACLU must fight for the rights of all people to petition the government, even if we do not agree with the ideas they represent. This commitment can, however, lead to a somewhat contradictory existence: at the same time we are fighting for National Voter Outreach’s right to circulate petitions in public places, we are strengthening our coalition work to defeat next year’s English-only legislation. It is the only option we have. _________________________ Intern Report By Jason Weaver I started my internship at the ACLU of Utah this summer with a lot of enthusiasm because it presented the perfect opportunity for me. I’ve always been interested in civil rights issues, and I’ve always felt that an attack against a group’s or an individual’s rights makes an attack against everyone’s rights more possible. This is why working on developing closer ties between the ACLU of Utah and the Latino community was right up my alley. Earlier this summer, the ACLU of Utah brought together a group of people who represent various Latino organizations to help us identify what particular problems Latinos are facing in Utah. Some of the topics that came up include worries about how English-only legislation will affect the community (which is an issue that the ACLU is already dealing with), police abuse and profiling, and the Memorandum of Understanding that proposed granting immigration authority to Salt Lake City police officers. In order to talk to people who have experienced these problems, I spent a couple of days at the Utah Hispanic-American Festival, staffing an ACLU booth. Several people told me about individuals they know who were deported without a hearing, and about how they are often pulled over by the police for no reason. Obviously, many of these people were interested in the ACLU and excited to find out that the ACLU is interested in them. One of the key issues that we discussed that weekend was the Memorandum of Understanding to cross-deputize police officers with la migra. A small victory came about when many concerned people showed up at the Salt Lake City Council meeting to express their concerns about this proposal. The public was able to convince the council not to adopt the memorandum. One of the most positive results of this meeting was that many concrete examples of police abuse were brought out before the council and several other government entities. I am proud to have had the opportunity to help the ACLU of Utah further their efforts to address civil rights abuses against minorities in Utah. I find it personally empowering to see people stand up for themselves, and I plan to continue helping the ACLU as a volunteer in any capacity that I can. Return to top of page

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