Splicing Life: The Social and Ethical Issues of Genetic ...

1 United States. President's Commission for the Study of Ethical Problemsin Medicine and Biomedical and Behavioral Research. SplicingLife: A Report on the Social and Ethical Issues of GeneticEngineering with Human Beings. Washington, DC: President'sCommission for the Study of Ethical Problems in Medicine andBiomedical and Behavioral Research, 1982. 126 document has been scanned and prepared for publication in AdobeAcrobat format by the staff of the National Information Resource onEthics and Human Genetics, supported by grant P41 HG01115 from theNational Human Genome Research Institute, National Institutes Information Resource on Ethics and Human GeneticsThe Joseph and Rose Kennedy Institute of EthicsGeorgetown UniversityWashington, DC 20057-1212202-687-3885, 888-GEN-ETHX, FAX: 202-687-6770 Social andEthical Issues ofGenetic Engineeringwith Human BeingsPresident's Commission for the Study ofEthical Problems in Medicine andBiomedical and Behavioral ResearchLibrary of Congress card number 83-600500 For sale by the Superintendent of Government Printing OfficeWashington, 20402 SplicingLifeA Report on the Socialand Ethical Issues ofGenetic Engineeringwith Human BeingsNovember 1982 President s Commission for the Study ofEthical Problems in Medicine andBiomedical and Behavioral ResearchPresident s Commission for the Study of EthicalProblems in Medicine and Biomedical andBehavioral ResearchMorris B.

2 Abram, , , Chairman,New York, Thomas Ballantine, , , Medical SchoolGeorge R. Dunlop, of MassachusettsDaher B. Rahi, Clair Shores, MichiganSeymour Siegel, TheologicalSeminary of America,New YorkBruce K. Jacobson, Medical SchoolLynda Smith, Springs, ColoradoJohn J. Moran, , TexasKay Toma, , CaliforniaArno G. Motulsky, of WashingtonCharles J. Walker, , TennesseeStaffAlexander M. Capron, , Executive DirectorDeputy DirectorBarbara Mishkin, , DirectorsJoanne Lynn, , Meisel, StaffMary Ann Baily, Buchanan, Burness, Kelly, MorganMarian Osterweis, Schapiro, AssistantsMichelle LeguayKatherine LockeJeffrey StrykerConsultantsBradford H. Gray, M. Powledge, VawterAdministrative OfficerAnne WilburnEditorLinda StarkeSupport StaffFlorence ChertokGretchen ErhardtRuth MorrisClara PittmanKevin PowersNancy WatsonPresident s CommissionCommonwealth Fellows andStudent InternsSusan Formaker (1982)Jeffrey Katz (1981)Kenneth Kim (1982) eddie Lockard (1982)Stephen Massey (1982)Lisa Rovin (1982)Mindy Werner (1982)President s Commission for the Study of Ethical Problemsin Medicine and Biomedical and Behavioral ResearchSuite 555, 2000 K Street, , Washington, DC 20006 (202) 653-8051 November 16, 1982 The PresidentThe White HouseWashington, Mr.

3 President:On behalf of the President's Commission for the Study ofEthical Problems in Medicine and Biomedical and BehavioralResearch, I am pleased to transmit Splicing Life, our Reporton the Social and Ethical Issues of Genetic engineering withhuman study, which was not within the Commission'slegislative mandate,was prompted by a letter to your predecessorin July 1980 from Jewish, Catholic, and Protestant embarked upon it, pursuant to 1802(a)(2)of our statute, at the urging of the President's people have suggested that developing the capabilityto splice human genes opens a Pandora's box, releasing mischiefand harm far greater than the benefits for biomedical Commission has not found this to be the laboratoryrisks in this field have received careful attention from thescientific community and governmental therapeuticapplications now being planned are analogous to other formsof novel therapy and can be judged by general Ethical standardsand procedures, informed by an awareness of the particularrisks and benefits that accompany each attempt at gene , still hypothetical uses of gene Splicing in humanbeings hold the potential for great benefit, such as heretoforeimpossible forms of treatment.

4 As well as raising fundamentalnew Ethical Commission believes that it wouldbe wise to have engaged in careful prior thought about stepssuch as treatments that can lead to heritable changes inhuman beings or those intended to enhance human abilitiesrather than simply correct deficiencies caused by well-definedgenetic disorders. In light of a detailed analysis of theethical and Social Issues of this subject-- Issues beyondthe purview of existing mechanisms for Federal oversight--theCommission suggests several possible means, in the privateas well as the public sector,through which these importantmatters can receive the necessary advance Commission is pleased to have had an opportunity toparticipate in the consideration of this issue of publicconcern and ,Norris B. AbramChairmanPresident s Commission for the Study of Ethical Problemsin Medicine and Biomedical and Behavioral ResearchSuite 555, 2000 K Street, , Washington, DC 20006 (202) 653-8051 November 16, 1982 The Honorable George BushPresidentUnited States SenateWashington, Mr.

5 President:On behalf of the President's Commission for the Study ofEthical Problems in Medicine and Biomedical and BehavioralResearch,I am pleased to transmit Splicing Life, our Reporton the Social and Ethical Issues of Genetic engineering withhuman beings. This study,which was not within the Commission'slegislative mandate, was prompted by a letter to the Presidentin July 1980 from Jewish, Catholic, and Protestant embarked upon it, pursuant to 1802(a)(2)of our statute, at the urging of the President's people have suggested that developing the capabilityto splice human genes opens a Pandora's box, releasing mischiefand harm far greater than the benefits for biomedical Commission has not found this to be the case. The laboratoryrisks in this field have received careful attention from thescientific community and governmental therapeuticapplications now being planned are analogous to other formsof novel therapy and can be judged by general Ethical standardsand procedures,informed by an awareness of the particularrisks and benefits that accompany each attempt at gene , still hypothetical uses of gene Splicing in humanbeings hold the potential for great benefit, such as heretoforeimpossible forms of treatment.

6 As well as raising fundamentalnew Ethical Commission believes that it wouldbe wise to have engaged in careful prior thought about stepssuch as treatments that can lead to heritable changes inhuman beings or those intended to enhance human abilitiesrather than simply correct deficiencies caused by well-definedgenetic light of a detailed analysis of theethical and Social Issues of this subject-- Issues beyondthe purview of existing mechanisms for Federal oversight--theCommission suggests several possible means, in the privateas well as the public sector,through which these importantmatters can receive the necessary advance Commission is pleased to have had an opportunity toparticipate in the consideration of this issue of publicconcern and ,Morris B. AbramChairmanPresident s Commission for the Study of Ethical Problemsin Medicine and Biomedical and Behavioral ResearchSuite 555, 2000 K Street, , Washington.

7 DC 20006 (202) 653-8051 November 16, 1982 The Honorable Thomas P. O'Neill, States House of RepresentativesWashington, 20515 Dear Mr. Speaker:On behalf of the President's Commission for the Study ofEthical Problems in Medicine and Biomedical and BehavioralResearch, I am pleased to transmit Splicing Life, our Reporton the Social and Ethical Issues of Genetic engineering withhuman beings. This study,which was not within the Commission'slegislative mandate,was prompted by a letter to the Presidentin July 1980 from Jewish, Catholic, and Protestant embarked upon it, pursuant to 1802(a)(2)of our statute, at the urging of the President's people have suggested that developing the capabilityto splice human genes opens a Pandora's box, releasing mischiefand harm far greater than the benefits for biomedical Commission has not found this to be the case.

8 The laboratoryrisks in this field have received careful attention from thescientific community and governmental therapeuticapplications now being planned are analogous to other formsof novel therapy and can be judged by general Ethical standardsand procedures, informed by an awareness of the particularrisks and benefits that accompany each attempt at gene , still hypothetical uses of gene Splicing in humanbeings hold the potential for great benefit, such as heretoforeimpossible forms of treatment,as well as raising fundamentalnew Ethical Commission believes that it wouldbe wise to have engaged in careful prior thought about stepssuch as treatments that can lead to heritable changes inhuman beings or those intended to enhance human abilitiesrather than simply correct deficiencies caused by well-definedgenetic light of a detailed analysis of theethical and Social Issues of this subject-- Issues beyondthe purview of existing mechanisms for Federal oversight--theCommission suggests several possible means, in the privateas well as the public sector,through which these importantmatters can receive the necessary advance Commission is pleased to have had an opportunity toparticipate in the consideration of this issue of publicconcern and ,Morris B.

9 AbramChairmanTable of ContentsSummary of Conclusions and Recommendations1 Chapter 1: Clarifying the IssuesThe Meaning of the Term Genetic Engineering Changes in the Genetic LandscapeManipulating GenesConcerns About Genetic EngineeringScientific Self-RegulationGovernmental SupervisionDeeper AnxietiesThe Commission s StudyObjectivesEducating the publicClarifying concerns expressed in slogansIdentifying the public policy issuesEvaluating the need for oversightThe Process of StudyChapter 2: The Dawn of a New Scientific Era25 Discovering Life s Mysteries25 Cells and Genes26 Accidents and Diseases28 The Technology of Gene Splicing30 Recombinant DNA Techniques30 Cell Fusion35 Genetically Engineered Medical Products36 Production of Drugs and Biologics36 Cancer Diagnosis and Therapy38 Genetic Screening and Diagnosis38 Curing Genetic Disorders42 Somatic Cells42 Germ-Line Cells45 Genes or Genies?

10 48 Chapter 3: Social and Ethical IssuesConcerns About Playing God Religious ViewpointsFully Understanding the Machinery of LifeArrogant Interference with NatureCreating New Life Forms78881010111318182021222323515353545 556 Concerns About ConsequencesWhat Are the Likely Outcomes?Medical applicationsEvolutionary impact on human beingsWill Benefit or Harm Occur?Parental rights and responsibilitiesSocietal obligationsThe commitment to equality of opportunityGenetic malleability and the sense of personalidentityChanging the meaning of being humanUnacceptable uses of gene splicingDistributing the power to control gene splicingCommercial-academic relationsContinuing ConcernsChapter 4: Protecting the FutureObjectivesRevising RACA ppendix A: GlossaryAppendix B: Letter from Three General SecretariesAppendix C: Federal Government Involvement inGenetic EngineeringAppendix D: The Commission s ProcessIndexFiguresFigure 1.