Skip to main content
Springer Nature Link
Log in

Commentary: a sociologist's view on community genetics

  • Review
  • Published:
Journal of Community Genetics Aims and scope Submit manuscript

Abstract

This commentary illustrates and discusses potential research directions for sociologists and anthropologists interested in the field of community genetics and its emerging networks of individuals genetically at risk. Community genetics—the application of medical genetics in community settings for the benefit of individuals—also involves social issues of lay-professional misunderstandings (and more recently also the different perspectives of various expert communities), stigmatization, discrimination, and medicalization. Focusing on a socio-anthropological perspective regarding the views and disagreements surrounding the definition and scope of community genetics, I overview several epistemological, methodological, and practical contributions that such perspective can offer to the study of community genetics.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
$34.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or eBook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Explore related subjects

Discover the latest articles and news from researchers in related subjects, suggested using machine learning.

References

  • Alhamdan NA, Almazrou YY, Alswaidi FM, Choudhry AJ (2007) Premarital screening for thalassemia and sickle cell disease in Saudi Arabia. Genet Med 9:372–377

    Article  PubMed  Google Scholar 

  • Atkin K, Ahmed S, Hewison J, Green JM (2008) Decision-making and antenatal screening for sickle cell and thalassaemia disorders: to what extent do faith and religious identity mediate choice? Curr Sociol 56(1):77–98

    Article  Google Scholar 

  • Banks S, Scully JL, Shakespeare T (2006) Ordinary ethics: the ethical evaluation of the new genetics by lay people. New Genet Soc 25(3):289–303

    Article  Google Scholar 

  • Bienvenu M, Colonomus B (1985) An introduction to american deaf culture. Sign Media, Silver Spring

    Google Scholar 

  • Bornik ZB, Dowlatabadia H (2008) Genomics in Cyprus: challenging the social norms. Technol Soc 30(1):84–93

    Article  Google Scholar 

  • Borry P, Dierickx K, Schotsmans P (2005) The birth of the empirical turn in bioethics. Bioethics 19(1):50–71

    Article  Google Scholar 

  • Bryant L, Ahmed S, Hewison J (2008) Conveying information about screening. In: Rodeck C, Whittle M (eds) Fetal medicine: basic science and clinical practice, 2nd edn. Elsevier, Edinburgh

    Google Scholar 

  • Chaabouni-Bouhamed H (2008) Tunisia: communities and community genetics. Community Genet 11:313–323

    PubMed  Google Scholar 

  • Clarke A (1997) Population screening for genetic carrier status. In: Harper PS, Clark A (eds) Genetics, society and clinical practice. Bios Scientific Publishers, Oxford

    Google Scholar 

  • Condit CM (1999) The meanings of the Gene: public debates about human heredity. University of Wisconsin Press, Madison

    Google Scholar 

  • Condit CM (2007) Science and society: how geneticists can help reporters to get their story right’. Nat Rev Gen 8(272):815–20

    Article  CAS  Google Scholar 

  • Cowan R (2008) Heredity and hope: the case for genetic screening. Harvard University Press, Cambridge

    Google Scholar 

  • Davidson M, David K, Hsu N (2000) Consumer perspectives on genetic testing: lessons learned. In: Khoury MJ, Burke WW, Thomson EJ (eds) Genetics and public health in the 21st century: using genetic information to improve health and prevent disease. Oxford monographs on medical genetics. Oxford University Press, Oxford

    Google Scholar 

  • De Vries R, Turner L, Orfali K, Bosk C (2007) The view from here: bioethics and the social sciences. Blackwell, Oxford

    Google Scholar 

  • Ebrahim SH, Lo SS, Zhuo J, Han JY, Delvoye P, Zhu L (2006) Models of preconception care implementation in selected countries. Matern Child Health J 105:S37–S42

    Article  Google Scholar 

  • Ekstein J, Katzenstein H (2001) The Dor Yesharim story: community-based carrier screening for Tay-Sachs disease. Adv Genet 44:297–310

    Article  CAS  PubMed  Google Scholar 

  • Featherstone K, Atkinson P, Bharadwaj A, Clarke A (2006) Risky relations: family, kinship and the new genetics. Berg, Oxford

    Google Scholar 

  • Gieryn T (1983) Boundary-work and the demarcation of science from non-science. Am Sociol Rev 48(6):781–95

    Article  Google Scholar 

  • Gieryn T (1999) Cultural boundaries of science: credibility on the line. The University of Chicago Press, Chicago

    Google Scholar 

  • Gollust SE, Apse K, Fuller BP, Miller PS, Biesecker BB (2005) Community involvement in developing policies for genetic testing: assessing the interests and experiences of individuals affected by genetic conditions. Am J Public Health 95(1):35–41

    Article  PubMed  Google Scholar 

  • Haimes E (2002) What can the social sciences contribute to the study of ethics? Theoretical, empirical and substantive considerations. Bioethics 16(2):89–95

    Article  PubMed  Google Scholar 

  • Haimes E, Williams R (2007) Sociology, ethics, and the priority of the particular: learning from a case study of genetic deliberations. Br J Sociol 58(3):457–476

    Article  PubMed  Google Scholar 

  • Health Council of the Netherlands (2008) Screening: Between Hype and Hope. The Hague: Health Council of the Netherlands, publication no. 2008/05E.

  • Hayeems RZ, Bytautas JP, Miller FA (2008) A systematic review of the effects of disclosing carrier results generated through newborn screening. J Genet Counsel 17(6):538–49

    Article  CAS  Google Scholar 

  • Henneman L, Langendam MW, ten Kate LP (2001) Community genetics and its evaluation$ a European science foundation workshop. Community Genet 4(1):56–59

    Article  PubMed  Google Scholar 

  • Khoury MI, Burke W, Thomson EI (2000) Genetics and public health in the 21st century. Oxford University Press, Oxford

    Book  Google Scholar 

  • Kleinman A (1999) Moral experience and ethical reflection: can ethnography reconcile them? a quandary for “the new bioethics”. Daedalus 128(4):69–97

    PubMed  Google Scholar 

  • Kleinman A, Das V, Lock M (1997) Social suffering. University of California Press, Berkeley

    Google Scholar 

  • Knoppers BK, Isasi RM (2004) Regulatory approaches to reproductive genetic testing. Hum Reprod 19(12):2695–701

    Article  PubMed  Google Scholar 

  • Knoppers BM, Brand AM (2009) From community genetics to public health genomics: what's in a name? Public Health Genomics 12(1):1–3

    Article  Google Scholar 

  • Lakeman P, Plass AMC, Henneman L, Bezemer PD, Cornel MC, ten Kate LP (2008) Three-month follow-up of Western and non-Western participants in a study on preconceptional ancestry-based carrier couple screening for cystic fibrosis and hemoglobinopathies in the Netherlands. Genet Med 10:820–30

    Article  CAS  PubMed  Google Scholar 

  • Lakeman P, Plass AMC, Henneman L, Bezemer PD, Cornel MC, ten Kate LP (2009) Preconceptional ancestry-based carrier couple screening for cystic fibrosis and haemoglobinopathies: what determines the intention to participate or not and actual participation? Eur J Hum Genet 17(8):999–1009

    Article  PubMed  Google Scholar 

  • Lee SS-J, Crawley L (2009) Research 2.0: social networking and direct-to-consumer genomics. The American Journal of Bioethics 9(6–7):35–44

    Article  PubMed  Google Scholar 

  • Lemke T (2002) Genetic testing, eugenics, and risk. Crit Public Health 12(3):283–90

    Article  Google Scholar 

  • Lemke T (2005) Beyond genetic discrimination: problems and perspectives of a contested notion. Genomics Society and Policy 1(3):22–40

    Google Scholar 

  • Marteau TM, Dormandy E, Michie S (2001) A measure of informed choice. Health Expect 4(2):99–108

    Article  CAS  PubMed  Google Scholar 

  • McAllister M (2001) Grounded theory in genetic counseling research. J Genet Couns 10(3):233–51

    Article  Google Scholar 

  • Michie S, Bron F, Bobrow MA, Marteau TM (1997) Nondirectiveness in genetic counseling: an empirical study. Am J Hum Genet 60(1):40–7

    CAS  PubMed  Google Scholar 

  • Modell B, Darr A (2002) Genetic counselling and customary consanguineous marriage. Nat Rev Genet 3(3):225–30

    Article  CAS  PubMed  Google Scholar 

  • Nelis A, de Vries G, Hagendijk R (2007) Patients as public in ethics debates: interpreting the role of patient’s organisations in democracy. In: Atkinson P, Glasner P, Greenslade H (eds) New genetics, new identities. Routledge, London

    Google Scholar 

  • Novas C (2006) The political economy of hope: patients’ organizations, science and biovalue. BioSocieties 1:289–305

    Article  Google Scholar 

  • Novas C (2007) Genetic advocacy groups, science and biovalue: creating political economies of hope. In: Atkinson P, Glasner P, Greenslade H (eds) New genetics, new identities: genetics and society. Routledge, London

    Google Scholar 

  • Novas C, Rose N (2000) Genetic risk and the birth of the somatic individual. Econ Soc 29(4):485–513

    Article  Google Scholar 

  • Padden C, Humphries T (1988) Deaf in america: voices from a culture. Harvard University Press, Cambridge

    Google Scholar 

  • Parens E, Asch E (2000) Prenatal Testing and Disability Rights. Georgetown University Press, Washington, DC

    Google Scholar 

  • Pilnick A (2002) “There are no rights and wrongs in these situations”: identifying interactional difficulties in genetic counselling. Sociol Health Illn 24(1):66–88

    Article  Google Scholar 

  • Prainsack B, Siegal G (2006) The rise of genetic couplehood: a comparative view of pre-marital genetic screening. Biosocieties 1(1):17–36

    Article  Google Scholar 

  • Prainsack B, Reardon J, Hindmarsh R, Gottweis H, Naue U, Lunshof JE (2008) Personal genomes: misdirected precaution. Nature 456:34–35

    Article  CAS  PubMed  Google Scholar 

  • Rabeharisoa V (2003) The struggle against neuromuscular diseases in France and the emergence of the ‘partnership model’ of patient organization. Soc Sci Med 57:2127–2136

    Article  PubMed  Google Scholar 

  • Rabeharisoa V, Callon M (2002) The involvement of patients’ associations in research. Int Soc Sci J 171:57–65

    Article  Google Scholar 

  • Raffle AE (2001) Information about screening: is it to achieve high uptake or to ensure informed choice? Health Expect 4(2):92–8

    Article  CAS  PubMed  Google Scholar 

  • Rapp R (1999) Testing women, testing the fetus: the social impact of amniocentesis in America. Routledge, New York

    Google Scholar 

  • Raz A (2005) The Gene and the Genie: tradition, medicalization, and genetic counseling in a bedouin community, ethnographic studies in medical anthropology series. Carolina Academic Press, Durham

    Google Scholar 

  • Raz A (2009) Community genetics and genetic alliances: eugenics, carrier testing, and networks of risk. Forthcoming. Routledge, New York

    Google Scholar 

  • Raz A, Vizner Y (2008) Carrier matching and collective socialization in community genetics: dor yeshorim and the reinforcement of stigma. Soc Sci Med 67:1361–1369

    Article  PubMed  Google Scholar 

  • Raz A, Schicktanz S (2009) Diversity and uniformity in genetic responsibility: moral attitudes of patients, relatives and lay people in Germany and Israel. Forthcoming Med Health Care Philos 12:433–442

    Article  Google Scholar 

  • Rozario S, Gilliat-Ray S (2007) Genetics, religion and identity: a study of British Bangladeshis’. Working Paper 93. School of Social Sciences, Cardiff University, Cardiff

    Google Scholar 

  • Samavat A, Modell B (2004) Iranian national thalassaemia screening programme. BMJ 329:1134–1137

    Article  PubMed  Google Scholar 

  • Scully JL, Rippberger C, Rehmann-Sutter C (2004) Nonprofessionals' evaluations of gene therapy ethics. Soc Sci Med 58(7):1415–25

    Article  PubMed  Google Scholar 

  • Sharp RR, Yarborough M, Walsh JW, Ethical, Legal, and Social Issues Working Group of the Alpha-1 Foundation (2008) Responsible patient advocacy: perspectives from the Alpha-1 Foundation. Am J Med Genet Part A 146A(22):2845–50

    Article  PubMed  Google Scholar 

  • Shaw A (2000) “Conflicting models of risk”: clinical genetics and British Pakistanis. In: Caplan P (ed) Risk revisited. Pluto Press, London

    Google Scholar 

  • Shaw A (2001) Kinship, cultural preference and immigration: consanguineous marriage among British Pakistanis. J Roy Anthropol Inst 7(2):315–25

    Article  Google Scholar 

  • Shaw A, Hurst J (2008a) “I don't see any point in telling them”: attitudes to sharing genetic information in the family and carrier testing of relatives among British Pakistani adults referred to a genetics clinic’. Ethn Health 13(5):417–34

    Article  Google Scholar 

  • Shaw A, Hurst J (2008b) “What is this genetics, anyway?” understandings of genetics, illness causality and inheritance among British Pakistani users of genetic services. J Genet Couns 17(5):459–71

    Article  Google Scholar 

  • Shiloh S (1999) Decision-making in the context of genetic risk. In: Marteau T, Richards M (eds) The troubled helix: social and psychological implications of the new human genetics. Cambridge University Press, Cambridge, pp 82–104

    Google Scholar 

  • Stockdale A, Terry SF (2002) Advocacy groups and the new genetics. In: Alpher JS, Ard C, Asch A, Beckwith J, Conrad P, Geller LN (eds) The double-edged helix: social implications of genetics in a diverse society. Johns Hopkins University Press, Baltimore

    Google Scholar 

  • ten Kate LP (2005) Community genetics: a bridge between clinical genetics and public health. Community Genet 8(1):7–11

    Article  PubMed  Google Scholar 

  • ten Kate LP (2008) Community genetics in the era of public health genomics. Community Genet 11(1):1

    Article  PubMed  Google Scholar 

  • Terry PF (2003) PXE International: harnessing intellectual property law for benefit sharing. In: Knoppers BM (ed) Populations and genetics: legal and socio-ethical perspectives. Martinus Nijhoff, Leiden

    Google Scholar 

  • Terry SF, Davidson ME (2000) Empowering the public to be informed consumers of genetic technologies and services. Community Genet 3(3):148–50

    Article  CAS  PubMed  Google Scholar 

  • Terry SF, Terry PF, Rauen KA, Uitto J, Bercovitch LG (2007) Advocacy groups as research organizations: the PXE International example. Nat Rev Genet 8:157–164

    Article  CAS  PubMed  Google Scholar 

  • van der Scheer L, Widdershoven G (2004) Integrated empirical ethics: loss of normativity? Med Healthc Philos 7(1):71–79

    Article  Google Scholar 

  • Wailoo K (2001) Dying in the city of the blues: sickle cell anemia and the politics of race and health. University of North Carolina Press, Chapel Hill

    Google Scholar 

  • Wailoo K, Pemberton S (2006) The troubled dream of genetic medicine. The Johns Hopkins University Press, Baltimore

    Google Scholar 

  • World Health Organization (WHO) (2002) Interfaces between Bioethics and the Empirical Social Sciences’. Third Meeting of the International Advisory Board on Bioethics Pan American Health Organization. World Health Organization, Buenos Aires

  • Zlotogora J (2009) Population programs for the detection of couples at risk for severe monogenic genetic diseases. Hum Genet 126(2):247–253

    Article  PubMed  Google Scholar 

  • Zlotogora J, Carmi R, Lev B, Shalev SA (2009) A targeted population carrier screening programme for severe and frequent genetic diseases in Israel. Eur J Hum Genet 17(5):591–597

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

I am grateful to the Editor-in-Chief and the external reviewer for their helpful comments. I would like to thank Barbara Prainsack for her insightful feedback on an earlier version of the manuscript. My special thanks to Leo ten Kate for suggesting this commentary and for providing inspiration to all of us who do community genetics.

Author information

Authors and Affiliations

  1. Department of Sociology and Anthropology, Ben-Gurion University, Beersheba, Israel

    Aviad E. Raz

Authors
  1. Aviad E. Raz
    View author publications

    You can also search for this author inPubMed Google Scholar

Corresponding author

Correspondence to Aviad E. Raz.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Raz, A.E. Commentary: a sociologist's view on community genetics. J Community Genet 1, 3–10 (2010). https://doi.org/10.1007/s12687-010-0001-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s12687-010-0001-5

Keywords

Profiles

  1. Aviad E. Raz View author profile