The Phoebe R. Berman Bioethics Institute at The Johns Hopkins University has received a three-year $9.9 million grant from the Pew Charitable Trusts to establish the Genetics and Public Policy Center in Washington, D.C. The center's first initiative will focus on ethical and public policy issues related to genetics and human reproduction.
"The development and use of reproductive genetics, like other critical issues facing our society, deserve a robust debate informed by scientific facts and ethical considerations," said Rebecca Rimel, president and chief executive officer of the Pew Charitable Trusts. "The Pew Charitable Trusts are committed to encouraging such conversations on this and other vital issues, and we welcome our partnership with The Johns Hopkins University in this endeavor."
Kathy Hudson, a molecular biologist, will direct the new center, which was approved by the Trusts' board of directors on March 13. Hudson is currently assistant director of the National Human Genome Research Institute at the National Institutes of Health, where she has led the policy, education and communication efforts for the Human Genome Project.
The Genetics and Human Reproduction Initiative will explore policy options and guidelines for using reproductive genetic technologies in humans, such as manipulating genes to select certain characteristics. While such genetic engineering in mice, rats and other laboratory animals is a vital component of basic biomedical research, the potential to use this and other techniques with humans raises moral, ethical and religious concerns.
"As the science advances and the potential to use these techniques in human reproduction grows, society needs to be prepared," Hudson said. "Genetics and reproduction are intensely personal because both are fundamental, intimate expressions of who we are as individuals, families, communities and as a species. Our goal is to provide an objective source of thoughtful and careful analysis, grounded in science and reflective of society's values, that we hope will inform the public debate and help in developing sound public policies."
Already, it's common to do prenatal genetic testing for pregnancies at increased risk for certain genetic syndromes, and embryos created by in vitro fertilization can now be screened for some inherited diseases before they are implanted into the mother's womb. But these techniques in reproductive genetics are not ethically simple, said Ruth Faden, director of the Bioethics Institute.
"Although genetic testing and screening clearly can alleviate much suffering for prospective parents, they also could be used for purposes that challenge current moral values," Faden said. "Should these techniques be used to select the gender or other traits of the embryo, or to avoid selecting an embryo at increased risk for developing a chronic disease later in life? In a society committed to equality of opportunity, we need to be ready to respond."
Goals of the Genetics and Human Reproduction Initiative include educating influential leaders about reproductive genetics, supporting research to assess public attitudes and concerns about the field, and creating a set of policy options for guiding the use of advances over the long term, Hudson said. The center will not advocate for any particular positions but rather will develop an analysis of pros and cons and create a range of options for consideration by policy-makers and others.
William R. Brody, president of the university, said, "We're pleased to join forces with the Pew Charitable Trusts to make valuable contributions in what may prove to be the most significant public policy issues in this century. Both Pew and Johns Hopkins historically have played major roles in helping to shape responsible public policy," he said, "and the new effort will build on studies of genetics and public policy that already are taking place here."
The Pew Charitable Trusts, based in Philadelphia, support nonprofit activities in the areas of culture, education, the environment, public policy and religion. The trusts make strategic investments to help organizations and citizens develop practical solutions to difficult problems. In 2001, with approximately $4.3 billion in assets, the Trusts committed more than $230 million to 175 nonprofit organizations.
Established in 1995, the Bioethics Institute at Johns Hopkins seeks answers to ethical dilemmas in medicine and biological and behavioral sciences by promoting research in bioethics and encouraging moral reflection among a broad range of scholars, professionals, students and citizens. The institute serves both The Johns Hopkins University and Johns Hopkins Health System and provides an intellectual home for faculty in all divisions whose research advances bioethical inquiry and whose teaching enables students and trainees to improve their understanding of bioethics in their personal and professional lives.