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Reprogenetics and Public Policy: Reflections and Recommendations

Reprogenetics and Public Policy: Reflections and Recommendations

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Published by The Hastings Center
This report discusses how new techniques at the intersection of reproductive medicine and genetics raise complex ethical questions that should not be resolved by a largely unregulated market. Rather, they demand policies that have been publicly and transparently developed.
This report discusses how new techniques at the intersection of reproductive medicine and genetics raise complex ethical questions that should not be resolved by a largely unregulated market. Rather, they demand policies that have been publicly and transparently developed.

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Published by: The Hastings Center on Feb 27, 2010
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08/22/2011

 
EILEEN AGAR • AUTOBIOGRAPHY OF AN EMBRYO
Repro 
genetics
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eprogenetics
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eprogenetics
A S
PECIAL
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UPPLEMENT TO THE
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ASTINGS
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and
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olicy 
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E F L E C T I O N S A N D
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E C O M M E N D A T I O N S
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 ARENSAND
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Repro 
genetics
 Working Group Members
Lori P. KnowlesThe Hastings Center Erik ParensThe Hastings Center Thomas MurrayThe Hastings Center Timothy CaulfieldUniversity of Alberta, Edmonton, CanadaChris EvansHarvard Medical SchoolDiane Scott-JonesBoston CollegeDiane B. PaulUniversity of Massachusetts at BostonBartha Maria KnoppersUniversite de Montreal, Montreal, Canada Andrea L. BonnicksenNorthern Illinois UniversityEric JuengstCase Western Reserve UniversityGladys White Veterans Health Admistration/American Nurses AssociationKathi HannaScience and Health Policy ConsultantRobert Cook-DeeganDuke UniversityBonnie Steinbock University at Albany, State University of New York 
Project Consultants
 Adrienne Asch Wellesley CollegePatricia BairdUniversity of British Columbia, Vancouver, CanadaElizabeth BartholetHarvard UniversityMark S. Frankel American Association for the Advancement of Science Jamie GrifoNew York University Medical Center  Andrew GrubbCardiff University, United KingdomRuth HubbardBilogical Laboratories, Harvard UniversityItziar Alkorta IdiakezUniversity of the Basque CountryPhilip NoguchiFood and Drug Administration John RobertsonLaw School, University of TexasSusan SherwinDalhousie University, Halifax, Canada Alison Harvison YoungQueens University, Kingston, Canada
Research Assistants
Samantha StokesMichael Khair Marguerite Strobel
Hastings Center Librarian
Chris McKee
 Art Director 
Nora Porter 
Hastings Center Staff 
Mary Ann Hasbrouck  Jaime IngrahamSandra Morales Vicki PeytonHeather AldermanCover image: Autobiography of an Embryo,by Eileen Agar. © Artist’s estate. Photo:© Tate Gallery, London / Art Resource, NY 
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 July-August 2003 / HASTINGSCENTERREPORT
 Acknowledgments
This report is possible due in large part to the hard work of our working group and project consultants. We are further indebted to Robert Cook-Deegan,Bruce Jennings, and Kathy Hudson, who offeredcomments on the penultimate draft of this report.Special thanks to Gregory Kaebnick for his manycontributions. While the opinions expressed in thereport are the authors’, many ideas originated withothers. Mistakes are the responsibility of the authors.This report is the product of a two-year projectconducted by The Hastings Center and funded byThe Greenwall Foundation. Additional funding wasprovided by The Overbrook Foundation.
 
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t the first of the discussions that led eventual-ly to this report, a respected researcher-clini-cian in the world of reprogenetic medicine re-ferred to his field as “one big embryo experi-ment.” The phrase nicely captures what thisreport is about. It is about the ethical issues and policy challenges that arise in the context of researchers and clin-icians doing new things with embryos. The range of suchactivities is wide and growing: from studying embryos forthe sake of basic knowledge about developmental biology;to using them as sources of embryonic stem cells that canbe coaxed to cure disease; to creating, selecting, and alter-ing them for the sake of producing children. This reportfocuses on that last set of aims and emphasizes the needfor improved public oversight—a need that grows moreurgent as reproductive and genetic medicine converge toproduce the new field of “reprogenetics.”
1
For a variety of reasons, research involving the use, cre-ation, alteration, and storage of gametes and embryos issubject to little regulation in the United States. This situa-tion is potentially dangerous. Unlike older in vitro fertil-ization (IVF) techniques, many new reprogenetic tech-niques make structural changes to cells,
2
and with struc-tural changes arise concerns about the safety of the chil-dren produced by the technology. Further, both older andnewer techniques raise concerns about the safety of the women who donate the eggs and the women in whom thefertilized eggs are implanted—the egg donors and the ges-tating mothers.But concerns about reprogenetics are not only aboutsafety. Just as important are concerns about the
well-being 
of children produced by these techniques—and about the well-being of the families and society that will welcomethose children. Are we in danger of allowing the marketmentality to colonize childbearing, as it has already colo-nized so much of our lives? Could the proliferation of techniques that increasingly enable us not just to havechildren, but to choose characteristics unrelated to theirhealth, exacerbate our tendency to think of children as theobjects of our making? Could these techniques lead us tothink of ourselves as mechanisms that are valued for ourindividual parts or traits rather than as individuals who arevalued for being unique wholes? Could it aggravate someforms of unfairness, or complicity with unjust norms?
3
Putpositively, what can we do to increase the chances thatthese techniques are used in ways that further the happi-ness of children, families—and ultimately the well-beingof our society as a whole?The answers to these questions will rest on fundamen-tal beliefs and commitments to such values as liberty,equality, solidarity, and justice. They will likely be com-plex and will sometimes reveal deep disagreements. Butsuch disagreement should not stand in the way of tryingto talk together about matters of such great importance. We, the authors of this document, cannot help buthave views of our own about some of these contestedquestions. But our primary purpose is not to defend thoseviews. Rather, we wish chiefly to establish that our society needs to find better ways to grapple with—and regulate—reprogenetic activities. The future of reprogenetic practiceis too important to be decided solely by the market. Wecall for the creation of an oversight structure that willmake possible a thorough and transparent policy discus-sion of reprogenetics and effective regulation of those fa-cilities involved in reprogenetic research and services.The report is divided into five parts: In the first, we de-lineate what we mean by 
reprogenetics 
. In the second, weidentify some of the ethical concerns that commentatorshave broached about reprogenetics and argue that ques-tions about well-being must be part of the policy conver-sation. Part three describes the historical roots of our cur-rent oversight situation. Reproductive medicine and ge-netics have long been overseen separately—and with very different degrees of care. The politics of abortion havelargely prevented any effective oversight of reproductivemedicine. But as reproductive medicine and genetics con-verge, the current state of affairs does not allow us as a so-ciety to anticipate and contemplate the emerging reproge-netic picture in all of its complexity.To shed light on what a better approach to reprogenet-ics policy in this country might look like, part four briefly explores the weaknesses and strengths of the regulatory ap-proaches adopted by the United Kingdom and Canada.The final part sketches a proposal for an oversight body that can respond to the technological and ethical realitiesof reprogenetics in this country.
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SPECIAL SUPPLEMENT / Reprogenetics and Pulic Policy: Reflections and Recommendations
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EPROGENETICS AND
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