Ethical, legal and social implications of genome research

Ethical, legal and social implications of genome research

Round The up MOLECULAR i'vlEDICINE TODAY web Ethical, legal and social im i Scientists involved in the global effortto map and sequence the huma...

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Ethical, legal and social im i Scientists involved in the global effortto map and sequence the human genome anticipate that this research will yield a range of public benefits as well as enhanced understanding of our very being. The generation of a complete genome map is meant to stimulate growth in the biotechnology industry and generate medical technologies, including new genetic diagnostic tests and genetic therapies. Yet genome researchers and other observers concede that ethical, legal and social issues are arising that must also be addressed as the science continues. Concerns over potential negative consequences of genome research, such as genetic discrimination, have inspired several genome programs to adopt provisions to address the social implications resulting from the mapping and sequencing effort. The sponsoring government agencies in the USA, the National Institutes of Health (NIH) and the Department of Energy (DOE), launched such initiatives soon after the Human Genome Program became formalized. These initiatives are called ELSI, for ethical, legal and social implications of genome research.

of groups and institutions, including academic and practicing bio ethicists, providers of genetic sevices, support groups for those affected by genetic disease, and consumer advocacy organizations. The ELSI projects are a novel approach allowing potential problems to be addressed within the context of and in concert with the science itself.

The Internet and ELSI

It is now common to see ELSI activities occuring in government, university and private labs. Such activities involve a broad network

ELSI information is by nature interdisciplinary, intersecting the fields of biology, medicine, public health, philosophy, law and sociology, among others. This information is picked up from where it originates and is almost spontaneously integrated into the network of hyperlinks that is the World-Wide Web (WVWV). The result is an ad hoc form of collaboration. The Internet allows its users to learn the basics of molecular genetics and genome technologies, observe a philosophical debate about eugenics, join discussion groups to communicate with others interested in ELSI issues, and find out about information that might exist in local libraries and elswhere in their communities. This review serves as a guide to specific ELSI-related resources on the WWW, grouped by theme.

Ethics and bioethics

Genetics

Who contributesto ELSI?

Science Ethics Resources on the Net

What the Hock is a Gone?

http://www.chem.vt.edu/ethics/vinny/ethxonline.html

http://falcon.cc.ukans.ed u/~jbrown/gene.html

MacLean Center for Clinical Medical Ethics

Canadian Genome Analysis and Technology

http://ccmemac4.bsd.uchicago.edu/CCMEHomePage.html#bioeth

http://cgat.bch.u montreal.ca/

Bioethics and Biomedical Ethics

GENE-COMBIS

http://fas-www.harvard.ed u/~blom/bioethics.html

http://www.elsevier.nl:80/journals/genecom bis/Men u.htrnl

ETHEX (the Exploratorium's Ethical Scenarios Forum)

Genome Educators Home Page

http://www.exploratoriu m.edu/genepool/ETHEX.html

http://www.lbl.gov/Education/Genome/Genorne-Ed.htrnl

MedWeb: Bioethics

HUM-MOLGEN (discussion forum)

http://www.emory.edu/WHSCL/medweb.bioethics.html

http://www.informatik.uni-rostock.de/H UM-MOLGEN/hum-mol.html

University of Pennsylvania - Center for Bioethics http://www.med.u pen n.ed u/~bioethic/

Philosophy

Ethics Beat http://condor.depaul.edu/ethics/beat.html

Public Policy of Eugenics http://english-server.hss.cmu.ed u/ctheory/r public_policy_eug.html

Moral Decision Making http://www.ethics.ubc.ca:80/~chrismac/ethical.decision.html

Medical College of Wisconsin Bioethics Online Service http://www.mcw.ed u/bioet h ics/

Legal Canadian Medical Association Department of Ethics and Legal Affairs http://hpbl .hwc.ca:8400/can med/depts/ethics.htm

The UBC Centre for Applied Ethics Home Page http://www.ethics.ubc.ca/

List of Philosophy Web-Sites http://english-www.hss.cmu.edu/philosophy.html

Philosophy on the Web http://www.phil.ru u.nl/philosophy-sites.html

Voice of the Shuttle: Philosophy Page http://humanitas.ucsb.edu/shuttle/philo.html

University of Chicago Philosophy Project http://www.med.u pen n.edu/~ bioethic/genetics.html

Science and society BLM - Brazilian Group of Social Studies of Science

Biotech Law Web Server http://biotechlaw,ari.net AAAS Scientific Freedom, Responsibility and Law Program http://www.aaas.org/spp/dspp/SFRL/sfrl.htm US State Legislative Summary

Genetic Modifications

http://www.bio.com:80/bio/lsumma ry.html

http://www.nada.kth.se/~ nv91 -asa/-I-rans/genes.html

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http://www.usp.br/nupes/blm.html

Embracing Change with All Four Arms http://ccme-mac4.bsd.uchicago.edu/JCV/J

GeneTech.html

©1995, Elsevier Science Ltd

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cations of genome research Health and medicine

Electronic journals and newsletters

Online Mendelian Inheritance in Man (OMIM) http://gdbwww.gdb.org/omim/docs/omimtop.html OncoLink http://cancer.med.upenn.edu/ Medical Matrix - Guide to Internet Clinical Medical Resources http://www.kumc.edu:80/mmatrix/ Virtual Hospital

British Medical Journal http://www.b mj.com/bmj/ JAMA (the Journal of the American Medical Association) Home Page http://www.amaassn.org/journals/standing/jama/jamahome.htm Human Genome News

http://indy.radiology.uiowa.edu/VirtualHospital.html

publications.html The Scientist gopher://ds2.internic.net/11/pub/the-scientist

MEDIC (Medical Education Information Center) http://medic.med.uth.tmc.edu/home.htm New Zealand Doctor WWW Home Page http://www.nzdoctor.co.nz/ IMEDNET (International Medical and Health Network) http://opal.vcu.edu/html/biomede/imednet.html South Eastern Regional Genetics Group

http://www.cc.emory.edu/PEDIATRICS/sergg/sergg.htm

ELSI Lawrence Berkeley National Laboratory's (LBNL) ELSI Project http://www.lbl.gov/Education/ELSI/ELSl.html Provides detailed information, ranging from genetic screening and patent issues to more general information regarding issues surrounding research. The National Center for Genome Resources (NCGR) Home Page http://www.ncgr.org/ A non-profit bioinformatics company that currently provides • two ELSI resources: the Scope Notes Series, a series of comprehensive overviews of subjects relating to genetics; and the Bibliography ofBioethics, a citation index with thousands of bioethic references. Both were created by the Kennedy School of Bioethics at Georgetown. DOE Program Report

http://www.ornl.gov/TechResources/Human_Genome/

http://www.ornl.gov/TechResources/Human_Genome/publicat]

Reference Genetics Library (University of Cambridge, UK)

http://rhmap.gen.cam.ac.uk:8081/Library/Libraryhomepage,html US National Library of Medicine http://wvvw.nlm,nih,gov/ Genetic Glossary http://www.gdb.org/Dan/DOE/prim6.html Science education MendelWeb http://www.netspace.org/MendelWeb/homepage.html Science, Math, and Medicine Related Links http://www.cs.uidaho.edu/~connie/interests-science.html BioQuest http://www.biology.iu pui.edu/BioQU EST/default.html The Exploratorium http://www.exploratorium.edu/ Access Excellence http://www.gene.com:80/ae/ KUMC Genetics Education Center http://www.ku mc.edu/G EC/ Your Chromosomes http://www.intelus.com/chrom/chromes.html

93PROGRA/93PR_INT.HTML This presents factual information concerning the ELSI program: funding, program management and references to laboratories directly involved in genetic research.

If you have ideas for other resources to be reviewed, or would like to contribute a review, contact the Editor at: [email protected]

Who needs to know about ELSI research information? ELSI research is meant to provide information about the social side of genome scienceto those who will ultimately make decisions and form attitudes about genome information and technologies. Nowthat this information is becoming available on the WWW, different users can easily accessspecific types of ELSI information. Students can browse for information to help with research projects, while doctors accessspecific sites to guide their patients to genetic services. Bioethicists can debate the

morality of human genetic manipulation, industry can understand consumer needs,and policymakerscan gain information for decidingwhether and howto regulate new genetictechnologies. Eventually, families may be able to turn to the Internet to help.them make important personal health decisions related to genetics. Although in its early stages, the Internet is emerging as a vital tool in ELSI communication. The Internet also gives you the opportunity to learn, collaborate and participate in the discussion of the issues arising from the Human Genome Program. l

Emily A. Kaltenbach and Lauren McCain National Center for Genome Resources, 1800 Old Pecos Trail, Santa Fe, NM 87505, USA. Teh'+l 505 982 7840. i:~v.._1 RNK QR9 '/RqN ~-mail" Imn(fl')nnnr nrn

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