The Ramazzini Institute
for Occupational and Environmental Health Research   

Who Are We?

     Since 1996, the University of Colorado Chancellor’s Office, the Program in Health Care Ethics, Humanities and Law, and the Program in Human Medical Genetics has co-hosted with the Eleanor Roosevelt Institute an annual conference series, “Genetics and Ethics in the 21^st Century.” The conference meets each year in Aspen, Colorado at the Given Institute of the University of Colorado to explore myriad ethical and legal issues in medical genetics. It is designed to meet the needs and interests of health care professionals, basic scientists, legislative leaders, members of the Bar and Judiciary, ethicists, representatives from the health care insurance industry, managed health care organizations, biotechnology corporations, and community organizations that serve an educational and advocacy role for individuals with genetic-related diseases.
     The sponsoring organizations began this annual series because the impact of the discoveries generated by genetics research on health care practices poses many challenges to health care professionals and the general public alike. On the one hand, both the public and health care professionals are quick to embrace the diagnostic and therapeutic advances made possible by our ever-increasing understanding of human genetics. Witness the growth in DNA testing to assess risk for genetic disease, ranging from testing pre-embryos prior to implantation to adult women for breast cancer. On the other hand, health professionals and the public alike are deeply skeptical of our ability to adequately control the use and application of this new understanding of human genetics. Consider the profound concerns that exist over who will have access to the information regarding people’s genetic profiles, or the controversy spurred by speculation about parental selection of their children’s genetic characteristics. Such concerns reveal that the public is still very cautious; we do not know how best to proceed with these new developments. This caution and uncertainty is unavoidable given the difficulty of understanding, let alone regulating, the evolution of social practices such as scientific research and health care.
     The series has been quite successful to date in creating a forum not just to become better educated about the ethical, legal and social implications of efforts to map and sequence the human genome but also to work collaboratively on the challenges posed by these implications. Each conference employs the innovative use of “real time” presentations and performances, such as mock trials and patient care conferences. These activities are important features of the conferences because they model the ways that genetic discoveries have broad impact, such as with medical practice, bench science, the media, and the legislative process. This modeling successfully conveys to the participants a keen understanding not just of the issues, but more importantly the actual deliberative processes employed by those who utilize new genetic advances. The conference facility at the Given Institute has contributed immeasurably to the success of these mock exercises. It contains a United Nations-style tiered amphitheater and several conference rooms, all of which encourage interactive work among the participants.
     The last conference, held this past July, focused on genetics in the workplace. The attendees included scientists working on decoding the human genome, ethicists, doctors, nurses, lawyers, labor representatives, epidemiologists, legislative leaders, representatives from the health care insurance industry, biotechnology corporations and community organizations that serve an educational and advocacy role for workers and for individuals with genetic-related diseases.
     The conference began with an overview by Dr. Raymond Gesteland, Chairman of Human Genetics at the University of Utah, of the basics of genetics. The idea was to make sure that those without PhD’s in molecular biology had some understanding of the biology underlying genetic issues. The keynote address was delivered by Lewis Maltby, JD, President of the National Workrights Institute. He posed the question of whether decoding the human genome was “moving us into a brave new world, or plunging us into the dark ages of medicine”. He described cases of people who had been identified as having genes that put them at risk for developing various illnesses or disorders. For a variety of reasons these people then became the victims of discrimination. An employer may not want to hire people who might get sick later, they may not want to pay for this employee’s future medical costs, or they, out of ignorance, may be afraid that they would “catch” the disorder. Over the course of the conference, consideration of how genetic testing might affect an individual’s employability and insurability was continually revisited.
     Richard Sharp, PhD, an ethicist at the National Institute for Environmental Health Sciences, discussed the issue of genetic responsibility. He noted that with knowledge of any kind, in this case knowledge of an individual's genetic makeup, comes responsibility. Once we know that an individual is genetically susceptible to certain disorders or diseases, is there a responsibility for that person to try to stay as healthy as possible? Are individuals obligated to not take a job that might put them at risk of getting sick? What obligation do employers have to protect their genetically vulnerable workers? Should they know who is genetically susceptible, and work to protect those people? Is the responsible thing to do to simply not hire people who might get sick under certain working conditions? What role does the government have in protecting these individuals? Such questions are complicated by the fact that even though we may be able to identify people susceptible to certain diseases or disorders, we are not able to tell them, with certainty, when or even if they will develop these disorders. Dr. Lee Newman, Head of the Division of Environmental and Occupational Health Sciences at National Jewish Medical Research Center in Denver, Colorado, described what is known about how genetics affects risk for occupational diseases. He emphasized that knowing that a person has genetic susceptibility to a disease or a disorder does not necessarily make us able to predict whether certain working conditions will affect that individual, raising the question of whether current workplace safety standards are adequate to protect the genetically susceptible individual.
     Brush Wellman, Inc., a beryllium manufacturer, has struggled with such issues for many years. Their Vice President for Occupational Medicine, Dr. David Deubner, spoke about genetic testing for employees applying for jobs in the beryllium manufacturing industry. People with a certain gene are susceptible to serious medical problems if they work around beryllium. He discussed issues related to pre-employment genetic testing from the standpoint of the potential employee, that individual’s family, and the employer. He also addressed the contentious issue of payment for the treatment of genetic illness that may be acquired in part or whole because of workplace exposures.
     Sheldon Samuels, Vice President for Policy Studies at the Ramazzini Institute, brought his many years of experience and dedication to worker’s rights to bear on the theme of the conference. His presentation focused in part on the heavy emotional toll that illness and loss of employment can take on workers. He also spoke poignantly about the alarming numbers of suicide among certain groups of workers, highlighting the seriousness that needs to be brought to discussion of corporate and other policies that can affect peoples employability and employment.
     Terry Sargent, an individual who was dismissed from her job shortly after beginning medical treatment for a genetic disease, described her experiences related to her job loss. She was able to articulate her feelings about her situation, while at the same time expressing empathy for her employer’s financial dilemma.
     The conference, like all conferences in the series, culminated in a mock exercise, this time one involving genetic testing in the workplace. Audience members were asked to play the role of members of a board of directors for a manufacturing company called “Dustco”. A proposal from the Human Resources and Occupational Medicine divisions of Dustco was presented to the Board. Approval of a policy of mandatory testing of alpha one antitrypsin deficiency, a genetic disorder that makes people subject to fatal lung disease, was sought. People who inherit the gene for alpha one antitrypsin deficiency are at risk to develop emphysema and other serious lung diseases. Their risk can be dramatically increased when there are environmental exposures such as cigarette smoke or dust. The company “representatives” were very well prepared to lay out what was, for some, a persuasive case that mandatory testing of workers was in the best interests of Dustco’s employees. Others in the audience were able to pose compelling reasons to reject the proposed policy, arguing that fears of discrimination and other concerns made adoption of the policy premature.
     As always, the mock exercise modeled to the audience the strengths and weaknesses of the moral deliberative process. The mock exercises always have their real life counterparts, be that a courtroom, a state legislative hearing, or a corporate board room. In each of these, decisions are made with too little time, too little information, and too little understanding. Decisions get made, though, nonetheless, and they each have consequences, consequences which become the legacy to those affected by what others in positions of power do. Choosing for others responsibly requires humility as well as wisdom.

“Genetics and Ethics in the 21st Century: Genetics and the Family,” the 6th conference in the series, will be held July 20-22, 2001 at the Given Institute of the University of Colorado in Aspen, Colorado. The focus of the conference will be interfamilial conflict caused by genetic testing. For registration information, please contact the Office of Continuing Medical Education at the University of Colorado School of Medicine at 1.800.882.9153 or visit their website at www.uchsc.edu/cme

Future Profiles

     Genetic Profiles will be amplified to create a catalog of "ecological" profiles. I.e., they will include social, economic, demographic, psychological, biomedical, and environmental data. Each of the affected populations face special problems, but share common research, legislative, employment, insurance, and health care needs. There may also be unexplored environmental questions that need to be highlighted, not only in terms of causation, but also in terms of protection as a population especially vulnerable to contaminated environments. Some members of each population are likely to have “membership” in other populations, creating an overlap of biomedical and environmental research and protection needs.