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SAN ANTONIO • “Genetics, Bioethics and the Common Good: Fearfully and Wonderfully Made” was the title and focus of the Third Annual Conference on Ethical, Social and Moral Implications of Genomic Research Technologies, held at the University of the Incarnate Word (UIW) Oct. 1-2.
Through formal presentations and special interest sessions, participants explored the issues of social justice and access to care raised by genetic advances; ethical principles for weighing competing medical, social and economic values in the context of genetic technologies; the role of religious commitments in debates over just access to genetic knowledge and technology; the stigma associated with genetic differences; and the cultural and environmental issues impacted by genomic technologies.
The conference was sponsored by the Sisters of Charity of the Incarnate Word, UIW, CHRISTUS Health, Oblate School of Theology and the University of Texas Health Science Center at San Antonio Hispanic Center of Excellence.
Brian Wallace, UIW director of major gifts, served as master of ceremonies, introducing UIW president, Dr. Louis J. Agnese, Jr., who remarked on the relevance of the conference’s topics to the university’s faith-based values.
Sister Helena Monahan, Ph.D., J.D., CCVI, led the opening prayer, in which she noted, “We have the opportunity here to reflect on the most challenging of human issues.”
Sister Maria Cimperman, OSU, assistant professor of moral theology at Oblate School of Theology, introduced keynote speaker, Dr. Maura Ryan, associate provost, associate professor of Christian ethics and Fellow of the Joan B. Kroc Institute for International Peace Studies at the University of Notre Dame, Indiana.
Sister Cimperman described Dr. Ryan’s primary interests as being in the areas of bioethics and health policy, feminist ethics and fundamental moral theology and went on to list some of the keynote speaker’s many achievements.
These included authoring the book, Ethics and Economics of Research Assisted Reproduction: the Cost of Longing; serving on the board of directors for the Society of Christian Ethics; and receiving a scholar award for the Center for Research on Women and Gender at the University of Illinois, Chicago — as well as being the mother of 4-year-old twins.
“I think it is fair to say,” said Ryan, “that we are in the genomic revolution.”
She noted the rapid changes taking place due to the success of the Human Genome Project, a 13-year effort founded by the National Institute of Health and the United States Department of Energy to map and sequence the human genome.
These changes include, she said, “the way we diagnose and treat disease, to the way we understand health and normality — even to the way that we conceptualize our relationships with our species,” adding that “numerically, we have about the same number of genes as a laboratory mouse and slightly more than a mustard seed.”
In the Human Genome Project, scientists have been able to identify the approximately 30,000 genes in human DNA and determine the sequences of the three billion pairs of which it is made.
“The human genome has been called ‘the Code of Codes,’ ‘the Book of Life,’ the scientists’ ‘Holy Grail’,” said Ryan.
She noted it has been predicted that by 2010 we will have tests in place for identifying “genetic predisposition” to many major causes of diseases and chronic illnesses in the United States.
It is further predicted that by 2020, doctors will rely on an individual’s genetics to prescribe drugs and dosages. “Cancer doctors will use drugs that precisely target a tumor’s molecular fingerprint,” said Ryan.
By 2030, it is expected the genetic basis for aging will be understood, extending the average life span to 90, and by 2040 it is believed gene therapy and gene-based drugs will be available for most diseases.
While debate in the United States has primarily focused on the issues of access to and control of this genetic information, Ryan, stated her focus would be on a less discussed area, “the implications of the genetic revolution for the multiple and unequal world health care in which these technologies emerge.”
She referred to the “ever-growing genomic divide” between “the genetically rich and the genetically poor countries of the world.”
She queried, “How will advances in genomics improve health in developing countries? What does personalized medicine and gene therapy mean to one third of the world’s population who live on less than two dollars a day? How are genetic investments likely to impact health care for the 45 million people in this country who are under or uninsured? How will we decide who reap the benefits of the genetic revolution and who will bear the burdens? Whose ‘Holy Grail’?”
Ryan placed the question of genomic justice in the context of Roman Catholic moral tradition and social thought on the building of a “just world”. She pointed out that, according to a World Health Organization report, genomic research originated primarily in the public sector of developed countries, but that private companies are now leading in this area. To insure high returns on their research investment, these companies tend to focus on diseases and health problems prevalent in developed countries, and even public research tends to concentrate on diseases that are priorities in developed nations.
“In 1997, for example, it was estimated that low and medium income countries accounted for only 20 per cent of the global pharmaceutical market,” she said, “even though they made up over 80 percent of the world’s population.”
She noted four factors underpinning concerns for equal access to the benefits of genetic technologies: “The lack of a system of universal health insurance; patterns of inequities of access to health care in the United States; a projected scarcity of the availability of genetic services relative to demand; and the likely high cost of such intervention.”
Referring to the United States Catholic bishops’ pastoral letter on the economy, she said, “The obligation to provide justice for all means that the poor have the single most urgent economic claim on the conscience of the nation.”
She then outlined the three broad principles of discernment, regarding justice in genomic advances, as being “respect for human dignity, relationality and solidarity.”
Regarding dignity, she noted that, in the Catholic tradition, the self is viewed as a totality of body, mind and spirit. “We can never be reduced to our genetic make-up,” she said. “Nor is the pursuit of biological existence the only value to be recognized in setting social or scientific priorities.”
She noted that “relationality brings individual rights and duties into conversation with the common good,” and that “solidarity captures a sense in which the claims of justice exerted by the poor enjoin not only our emotions … but it enjoins our choices about what we will produce, how we will use goods, as well as how we will organize society.”
Ryan then offered several reflections on the vision of justice in the genomic age. “We must address what is broken in our health care system today,” she said. “We must insist that our national leaders and our candidates for office answer to the need for universal health care coverage, however that can be accomplished, and quality care, regardless of race, ethnicity or geography, as a national priority just as compelling as the war on terror.
“Secondly, religious communities must take part in educated, substantive debates over how we, as a nation, ought to prioritize among areas of genetic research. How we ought to regulate technologies in such a way that abuses and excesses can be controlled, while the interests of parents in maintaining rightful authority in reproductive decisions can be honored.”
She further noted, “An option for the poor globally also takes the form of encouraging the creation of research collaboration between genetically advanced countries … and genetically less advanced.” She added that benefits from genomic research “will be irrelevant to countries that do not have a functioning health care system in place.”
Finally, she observed, “The greatest challenge in the context of justice and equity and access to genetic advances is how to mobilize action on behalf of the poor and marginalized in the face of powerful counter values — profitability, self-interest, market share — and in the face of powerful multi-national actors.” She agrees with the idea of global advocacy networks through the area of religion being a possible solution.
Ryan concluded by borrowing from an image of the philosopher Albert Johnson in likening the present genomic age to the start of the colonial period, which mapped previously uncharted areas.
“The rapidly redrawn map of discovery and colonization depicted areas of glorious achievement and areas of deplorable tragedy,” she said. “Whether the map that we are making, in understanding the genetic basis for life, will chart years of glorious achievement or of tragedy, of health for all or only for some, depends on the kind of commitments we bring to this journey.”
The second day of the conference included a presentation by Rick Guidotti, former international fashion photographer and director of Positive Exposure, a not-for-profit organization which uses creative programs to raise consciousness regarding the stigma associated with genetic differences. Guidotti’s photos and video interviews demonstrate the beauty underlying genetic variation and his photos were on display during the conference. |