Hopkins to create center for ethics in genetic science

Pew Charitable Trusts to provide $9.9 million

March 16, 2002|By Kate Shatzkin | Kate Shatzkin,SUN STAFF

The Phoebe R. Berman Bioethics Institute at Johns Hopkins University has received a $9.9 million grant to establish a center for education and research on the fast-moving field of genetic science.

The three-year grant from the Pew Charitable Trusts will "dramatically" increase the size and scope of the small institute, which was established in 1995 to examine ethical questions in medical research and patient care, said Ruth R. Faden, its executive director.

The Genetics and Public Policy Center, to be located in Washington, will be directed by Kathy Hudson, assistant director of the National Human Genome Research Institute at the National Institutes of Health.

Faden said much of the center's early work will focus on the emerging field of "pre-implantation genetic diagnosis" - screening eggs for defects before they are implanted in a woman's uterus.

She noted the recent case of a woman who gave birth to a daughter after having her eggs fertilized and screened in a laboratory to make sure they did not contain a gene from the mother that causes early-onset Alzheimer's disease. Critics fear that such techniques also could be used to select positive characteristics and produce "designer" babies.

"There are issues that turn on [the question], `What techniques should we consider permissible?'" Faden said. "Then there are questions about purposes. Are there any purposes to which genetic techniques should not be used?

"The center's role will be to try to clarify for all of us - and policymakers in particular - what the central policy options are."

The new center also will delve into the ethical and moral issues of reproductive cloning.

Faden described the center's work as an outgrowth of the Bioethics Institute, which has developed procedural guidelines for Hopkins on how to properly obtain fetal tissue for stem cell research. The institute also has examined research practices after the death of a 24-year-old volunteer in a Hopkins asthma study last year, and investigated local and regional influences on the care of dying patients.

For the Pew trusts, the grant to Hopkins is part of an effort to create institutions that encourage and focus debate on issues of public interest.

"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," Rebecca Rimel, president and chief executive officer of the Pew trusts, said in a statement.

John Sterling, managing editor of Genetic Engineering News in Larchmont, N.Y., said the center will provide a welcome bridge between scientists and the public.

"We need to take into account how the public - the ultimate consumers of all this technology - how they're going to look at this," Sterling said. "If you have blinders on in dealing ... with a population that doesn't understand what you're doing, that could have a lot of pitfalls."

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