Skip to main content Accessibility help
×
Hostname: page-component-75d7c8f48-cp9qn Total loading time: 0 Render date: 2026-03-25T07:17:47.564Z Has data issue: false hasContentIssue false

7 - Population screening

Published online by Cambridge University Press:  05 July 2011

By
Ainsley J. Newson
Edited by
Angus Dawson
Ainsley J. Newson
Affiliation:
University of Bristol
Angus Dawson
Affiliation:
Keele University
Get access

Summary

Introduction

At first glance, the idea of examining a group of asymptomatic individuals for signs of disease or illness would appear laudable, even essential. Who would not want to try to prevent or provide early treatment for serious conditions such as cancer or HIV/AIDS? The screening tests involved are often minor, can significantly reduce morbidity and can even be life-saving. The myriad population screening programmes now in existence are underpinned by the rationale that screening can help optimize population health.

Yet issues such as impinging, however slightly, on people's liberty when offering a screening test mean that the introduction of this sort of health monitoring in populations should not be undertaken without careful factual and ethical analysis. Offering an unproven or ill-chosen test to an individual can have far-reaching implications for their future health care and well-being. Population screening may also conflict with valued ethical principles in health care, such as autonomy and consent. Ethical considerations arise with implications for health professionals, recipients and policy makers.

Conversely, the principles and frameworks for ethical analysis in a public health context (although methodologically uncertain) arguably differ from traditional analyses in medical ethics. It may be short-sighted to prioritize individual interests over those of society, as there are opportunities for rich ethical analysis in assessing the relative values of individual and collective interests in public health. Focusing on preventive medicine in asymptomatic populations raises the prospect of a collectivist ethic, in which communal life and the links that sustain it must be recognized (Jennings, 2007).

Information

Type
Chapter
Information
Public Health Ethics
Key Concepts and Issues in Policy and Practice
 , pp. 118 - 142
Publisher: Cambridge University Press
Print publication year: 2011

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Book purchase

Temporarily unavailable

References

,ACOG Committee on Genetics (2004) Prenatal and preconceptional carrier screening for genetic diseases in individuals of Eastern European Jewish descent. Obstetrician and Gynecologist, 104: 425–8.Google Scholar
Almond, B. and Ulanowsky, C. (1990) HIV and pregnancy. Hastings Center Report, 20(2): 16–21.CrossRefGoogle Scholar
Andorno, R. (2004) The right not to know: an autonomy based approach. Journal of Medical Ethics, 30: 435–40.CrossRefGoogle ScholarPubMed
Angastiniotis, M., Kyriakidou, S. and Hadjiminas, M. (1986) How thalassaemia was controlled in Cyprus. World Health Forum, 7: 291–7.Google Scholar
Ballantyne, A. (2006) Medical Genetic Services in Developing Countries: The Ethical, Legal and Social Implications of Genetic Testing and Screening. Geneva:World Health Organization.Google Scholar
Bayer, R., Gostin, L. O., Jennings, B. and Steinbock, B. (eds) (2006) Public Health Ethics: Theory, Policy and Practice. New York: Oxford University Press.Google Scholar
Bayer, R., Dubler, N. N. and Landesman, S. (1993) The dual epidemics of tuberculosis and AIDS: ethical and policy issues in screening and treatment. American Journal of Public Health, 83: 649–54.CrossRefGoogle ScholarPubMed
Bennett, R. (2001) Antenatal genetic testing and the right to remain in ignorance. Theoretical Medicine and Bioethics, 22: 461–71.CrossRefGoogle ScholarPubMed
Bennett, R. (2004) Routine antenatal HIV testing and its implications for informed consent. In Ethics and Midwifery, ed. Frith, L. and Draper, H., 2nd edn. Edinburgh: Books for Midwives, pp. 74–90.Google Scholar
Bennett, R. (2007) Routine antenatal HIV testing and informed consent: an unworkable marriage?Journal of Medical Ethics, 33: 446–8.CrossRefGoogle ScholarPubMed
Berlin, L. (1999) Malpractice issues in radiology: screening versus diagnostic mammography. American Journal of Roentgenology, 173: 3–7.CrossRefGoogle Scholar
Bratton, A. J. (2007) Deputies seize baby to test blood against parents' will. Iowa State Daily, 22 October.
Brett, J., Austoker, J. and Ong, G. (1998) Do women who undergo further investigation for breast screening suffer adverse psychological consequences?Journal of Public Health Medicine, 20: 396–403.CrossRefGoogle ScholarPubMed
,British Medical Association (2005) Population Screening and Genetic Testing: A Briefing on Current Programmes and Technologies. London: BMA. ‘Available at: http://www.bma.org.uk/images/ScreeningBriefing2_tcm41-20993.pdf (accessed: 04/04/11).Google Scholar
Burris, S. and Gostin, L. O. (2004) Genetic screening from a public health perspective: three ‘ethical’ principles. In A Companion to Genethics, ed. Burley, J. and Harris, J.. Oxford: Blackwell, pp. 455–64.CrossRefGoogle Scholar
Chadwick, R., ten Have, H., Husted, J., et al. (1998) Genetic screening and ethics: European perspectives. Journal of Medicine and Philosophy, 23: 255–73.CrossRefGoogle ScholarPubMed
Chadwick, R., ten Have, H., Hoedemaekers, R., et al. (2001) Euroscreen 2: towards community policy on insurance, commercialization and public awareness. Journal of Medicine and Philosophy, 26: 263–72.CrossRefGoogle ScholarPubMed
Clarke, A. (1995) Population screening for genetic susceptibility to disease. British Medical Journal, 311: 35–8.CrossRefGoogle ScholarPubMed
Clarke, A. J. (1997) Newborn screening. In Genetics, Society and Clinical Practice, ed. Harper, P. S. and Clarke, A. J.. Oxford: Bios Scientific Publishers, pp. 107–17.Google Scholar
Clarke, A. (2007) Genetic counselling. In Principles of Health Care Ethics, 2nd edn, ed. Ashcroft, R. E., Dawson, A., Draper, H. and McMillan, J. R.. Chichester: John Wiley, pp. 427–34.Google Scholar
Clayton, E. W. (2004) Genetic testing and screening: newborn genetic screening. In Encyclopedia of Bioethics, 3rd edn, ed. Post, S. G.. New York: Macmillan Reference, pp. 1004–7.Google Scholar
,Department of Health (2005) Concordat and Moratorium on Genetics and Insurance. London: Department of Health. Available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4105905 (accessed: 27/11/07).Google Scholar
Zulueta, P. and Boulton, M. (2007) Routine antenatal HIV testing: the responses and perceptions of pregnant women and the viability of informed consent. A qualitative study. Journal of Medical Ethics, 33: 329–36.CrossRefGoogle ScholarPubMed
,European Society of Human Genetics, Public and Professional Policy Committee (2003) Population genetic screening programmes: technical, social and ethical issues. European Journal of Human Genetics, 11(Suppl. 2): S5–S7.CrossRefGoogle Scholar
Faden, R., Chwalow, A. J., Holtzman, N. A. and Horn, S. D. (1982a) A survey to evaluate parental consent as public policy for neonatal screening. American Journal of Public Health, 72: 1347–52.CrossRefGoogle ScholarPubMed
Faden, R., Holtzman, N. A. and Chwalow, A. J. (1982b) Parental rights, child welfare and public health: the case of PKU screening. American Journal of Public Health, 72: 1396–400.CrossRefGoogle ScholarPubMed
Fink, L. and Collins, F. S. (2000) The human genome project: evolving status and emerging opportunities for disease prevention. In Genetics and Public Health in the 21st Century, ed. Khoury, M. J., Burke, W. and Thomson, E. J.. New York: Oxford University Press, pp. 45–59.CrossRefGoogle Scholar
Fost, N. (1999) Ethical implications of screening asymptomatic individuals. In New Ethics for the Public's Health, ed. Steinbock, B. and Beauchamp, D. E.. New York: Oxford University Press, pp. 344–52.Google Scholar
Foster, P. and Anderson, C. M. (1998) Reaching targets in the national cervical screening programme: are current practices unethical?Journal of Medical Ethics, 24: 151–7.CrossRefGoogle ScholarPubMed
Friedman Ross, L. (2002) Genetic testing of children: who should consent? In A Companion to Genethics, ed. Harris, J. and Burley, J.. Oxford: Blackwell, pp. 114–26.Google Scholar
Gostin, L. O. (2000) Public Health Law: Power, Duty, Restraint. Berkeley, CA: University of California Press.Google Scholar
Gostin, L. O. (ed.) (2002) Public Health Law and Ethics: A Reader. Berkeley, CA: University of California Press.
Green, J. M., Hewison, J., Bekker, H. L., Bryant, L. D. and Cuckle, H. S. (2004) Psychosocial aspects of genetic screening of pregnant women and newborns: a systematic review. Health Technology Assessment, 8(33): 1–124.CrossRefGoogle ScholarPubMed
Gustaffson Stolt, U., Ludvigsson, J., Liss, P.-E. and Svensson, T. (2003) Bioethical theory and practice in genetic screening for Type 1 diabetes. Medicine, Health Care and Philosophy, 6: 45–50.CrossRefGoogle Scholar
Guthrie, R. (1986) Newborn screening: past, present and future. In Genetic Disease: Screening and Management, ed. Carter, P. and Wiley, A. M.. New York: Alan Liss, pp. 319–39.Google Scholar
Harris, J. and Keywood, K. (2001) Ignorance, information and autonomy. Theoretical Medicine and Bioethics, 22: 415–36.CrossRefGoogle ScholarPubMed
Hodge, J. G. (2004) Genetic testing and screening: public health context. In Encyclopedia of Bioethics, 3rd edn, ed. Post, S. G.. New York: Macmillan Reference, pp. 1016–20.Google Scholar
Jennings, B. (2007) Community in public health ethics. In Principles of Health Care Ethics, 2nd edn, ed. Ashcroft, R. E., Dawson, A., Draper, H. and McMillan, J. R.. Chichester: John Wiley, pp. 543–8.Google Scholar
Jepson, R. G., Hewison, J., Thompson, A. G. and Weller, D. (2005) How should we measure informed choice? The case of cancer screening. Journal of Medical Ethics, 31: 192–6.CrossRefGoogle ScholarPubMed
Jepson, R. G., Hewsin, J., Thompson, A. and Weller, D. (2007) Patient perspectives on information and choice in cancer screening: a qualitative study in the UK. Social Science and Medicine, 65: 890–9.CrossRefGoogle ScholarPubMed
Juth, N. and Munthe, C. (2007) Screening: ethical aspects. In Principles of Health Care Ethics, 2nd edn, ed. Ashcroft, R. E., Dawson, A., Draper, H. and McMillan, J. R.. Chichester: John Wiley, pp. 607–15.Google Scholar
Katz Rothman, B. (1993) The Tentative Pregnancy: How Amniocentesis Changes the Experience of Motherhood. New York: W.W. Norton.Google Scholar
Kayton, A. (2007) Newborn screening: a literature review. Neonatal Network, 26: 85–95.CrossRefGoogle ScholarPubMed
Kenen, R. and Schmidt, R. (1987) Social implications of screening programs for carrier status: genetic diseases in the 1970s and AIDS in the 1980s. In Dominant Issues in Medical Sociology, ed. Schwartz, H. D.. New York: Random House, pp. 145–54.Google Scholar
Kerruish, N. J. and Robertson, S. P. (2005) Newborn screening: new developments, new dilemmas. Journal of Medical Ethics, 31: 393–8.CrossRefGoogle ScholarPubMed
Kerruish, N. J., Campbell-Stokes, P. L., Gray, A., Merriman, T. R., Robertson, S. P. and Taylor, B. J. (2007) Maternal psychological reaction to newborn genetic screening for type 1 diabetes. Pediatrics, 120(2): 324.CrossRefGoogle ScholarPubMed
Khoury, M. J., Burke, W. and Thomson, E. J. (2000) Genetics and public health: a framework for the integration of human genetics into public health practice. In Genetics and Public Health in the 21st Century, ed. Khoury, M. J., Burke, W. and Thomson, E. J.. New York: Oxford University Press, pp. 3–24.CrossRefGoogle Scholar
Lappé, M., Gustafson, J. and Roblin, R. (1972) Ethical and social issues in screening for genetic disease. New England Journal of Medicine, 286: 1129–32.CrossRefGoogle Scholar
Lappé, M. (1983) Ethical issues in testing for differential sensitivity to occupational hazards. Journal of Occupational Medicine, 25: 797–808.Google ScholarPubMed
Laurie, G. (2002) Better to hesitate at the threshold of compulsion: PKU testing and the concept of family autonomy in Eire. Journal of Medical Ethics, 28: 136–7.CrossRefGoogle ScholarPubMed
Leib, J. R., Gollust, S. E., Hull, S. C. and Wilfond, B. S. (2005) Carrier screening panels for Ashkenazi Jews: is more better?Genetics in Medicine, 7: 185–90.CrossRefGoogle ScholarPubMed
Lippman, A. (1991) Prenatal genetic testing and screening: constructing needs and reinforcing inequities. American Journal of Law and Medicine, 17: 15–50.Google ScholarPubMed
Mann, J. M. (1997) Medicine and public health, ethics and human rights. Hastings Center Report, 27(3): 6–13.CrossRefGoogle ScholarPubMed
Marshall, T. and Adab, P. (2003) Informed consent for breast screening: what should we tell women?Journal of Medical Screening, 10: 22–6.CrossRefGoogle ScholarPubMed
Marteau, T. M., Dormandy, E. and Michie, S. (2001) A measure of informed choice. Health Expectations, 4: 99–108.CrossRefGoogle ScholarPubMed
Marteau, T. M. and Kinmonth, A. L. (2002) Screening for cardiovascular risk: public health imperative or matter for individual informed choice?British Medical Journal, 325: 78–80.CrossRefGoogle ScholarPubMed
Muir-Gray, J. A. and Pearce-Smith, N. (2007) Screening Specialist Library. NHS National Electronic Library for Health. Available at: http://www.library.nhs.uk/screening/ (accessed: 22/11/07).
Murray, T. H. (1983) Genetic screening in the workplace: ethical issues. Journal of Occupational Medicine, 25: 451–4.CrossRefGoogle ScholarPubMed
,National Health Service (2006) NHS Sickle Cell and Thalassaemia Screening Programme. London: NHS Antenatal and Newborn Screening Programmes. Available at: http://sctscreening.nhs.uk/ (accessed: 04/04/11).Google Scholar
,National Health Service Executive (1997) Population Screening for Prostate Cancer. London: Department of Health. ‘Prostate Cancer EL (97)12. Leeds: Department of Health’.Google Scholar
,National Screening Committee (2003) Criteria for Appraising the Viability, Effectiveness and Appropriateness of a Screening Programme. London: Department of Health. Available at: http://www.screening.nhs/uk/criteria (accessed: 04/04/11).Google Scholar
,National Screening Committee (2011) Aims and Objectives of the NHS Down's Syndrome Screening Programme. London: Department of Health. Available at: http://fetalanomaly.screening.nhs.uk/cms.php?folder=2452 (accessed: 04/04/11).
,National Screening Committee (2011) What Is Screening?London: Department of Health. Available at: http://www.screening.nhs.uk/screening (accessed: 5/04/11).Google Scholar
Newson, A. (2006) Should parental refusals of newborn screening be respected?Cambridge Quarterly of Healthcare Ethics, 15: 135–46.CrossRefGoogle ScholarPubMed
Nijsingh, N. (2007) informed consent and the expansion of newborn screening. In Ethics, Prevention, and Public Health, ed. Dawson, A. and Verweij, M.. Oxford: Oxford University Press, pp. 198–212.Google Scholar
,Nuffield Council on Bioethics (1993) Genetic Screening: Ethical Issues. London: Nuffield Council on Bioethics.Google Scholar
Parsons, E. P., Clarke, A. J. and Bradley, D. M. (2003) Implications of carrier identification in newborn screening for cystic fibrosis. Archives of Disease in Childhood: Fetal and Neonatal Edition, 88: F467–F471.CrossRefGoogle ScholarPubMed
Paul, D. (1999) Contesting consent: the challenge to compulsory neonatal screening for PKU. Perspectives in Biology and Medicine, 42: 207–19.CrossRefGoogle ScholarPubMed
Philipkoski, N. (2001) Genetic testing case settled. Wired Magazine. Available at: http://www.wired.com/science/discoveries/news/2001/04/42971 (accessed: 27/11/07).Google Scholar
Pfeffer, N. (2004) ‘If you think you've got a lump, they'll screen you.’ Informed consent, health promotion, and breast cancer. Journal of Medical Ethics, 30: 227–30.CrossRefGoogle Scholar
Pollitt, R. J., Green, A., McCabe, C. J., et al. (1997) Neonatal screening for inborn errors of metabolism: cost, yield and outcome. Health Technology Assessment, 1(7).Google ScholarPubMed
,President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (1983) Screening and Counseling for Genetic Conditions: A Report on the Ethical, Social and Legal Implications of Genetic Screening, Counseling and Education Programs. Washington, DC: US Government Printing Office. Available at: http://www.bioethics.gov/reports/past_commissions/geneticscreening.pdf (accessed: 04/04/11).Google Scholar
Press, N. and Clayton, E. W. (2000) Genetics and public health: Informed consent beyond the clinical encounter. In Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease, ed. Khoury, M. J., Burke, W. and Thomson, E. J.. New York: Oxford University Press, pp. 505–26.CrossRefGoogle Scholar
Press, N. and Ariail, K. (2004) Genetic testing and screening: reproductive genetic testing. In Encyclopedia of Bioethics, 3rd edn, ed. Post, S. G.. New York: Macmillan Reference, pp. 996–1004.Google Scholar
Raffle, A. E. (1997) Informed participation in screening is essential (letter)British Medical Journal, 315: 1762.CrossRefGoogle Scholar
Raffle, A. E. (2001) Information about screening: is it to achieve high uptake or to ensure informed choice?Health Expectations, 4: 92–98.CrossRefGoogle ScholarPubMed
Raikka, J. (1998) Freedom and a right (not) to know. Bioethics, 12: 49–63.CrossRefGoogle Scholar
Rhodes, R. (1998) Genetic links, family ties and social bonds: rights and responsibilities in the face of genetic knowledge. Journal of Medicine and Philosophy, 23: 10–30.CrossRefGoogle ScholarPubMed
Riis, P. (1985) Ethical issues in mass screening procedures. In Ethical Issues in Preventive Medicine, ed. Doxiadis, S.. Dordrecht: Martinus Nijhoff Publishers, pp. 84–89.CrossRefGoogle Scholar
Rothenberg, M. B. and Sills, E. M. (1968) Iatrogenesis: the PKU anxiety syndrome. Journal of the American Academy for Child Psychiatry, 7: 689–92.CrossRefGoogle ScholarPubMed
Schulte, P. A. and DeBord, D. G. (2000) Public health assessment of genetic information in the occupational setting. In Genetics and Public Health in the 21st Century, ed. Khoury, M. J., Burke, W. and Thomson, E. J.. New York: Oxford University Press, pp. 203–19.CrossRefGoogle Scholar
Sherr, L., Fox, Z., Lipton, M., Whyte, P., Jones, P., Harrison, U. and ,the Camden and Islington Steering Group (2006) Sustaining HIV testing in pregnancy: evaluation of routine offer of HIV testing in three London hospitals over 2 years. AIDS Care, 18: 183–8.CrossRefGoogle ScholarPubMed
Shickle, D. and Chadwick, R. (1994) The ethics of screening: is ‘screeningitis’ an incurable disease?Journal of Medical Ethics, 20: 12–18.CrossRefGoogle ScholarPubMed
Skrabanek, P. (1990) Why is preventive medicine exempted from ethics constraints?Journal of Medical Ethics, 16: 187–90.CrossRefGoogle ScholarPubMed
Stanley, F. (1996) Litigation or science: what's driving medical decision-making? Australian Law Reform Commission. Available at: http://www.austlii.edu.au/au/other/alrc/publications/reform/reform69/ALRCR69LITIGATIONORSCIENCE.html (accessed: 16/7/07).Google Scholar
Thornton, J. (1999) Should Health Screening be Private?London: Institute of Economic Affairs.Google Scholar
Tudor Hart, J. (2008) A few lessons in screening for Gordon Brown. British Medical Journal, 336: 123.CrossRefGoogle Scholar
Berg, M., Timmermans, D. R., ten Kate, L. P., Vugt, J. M. and Wal, G. (2005) Are pregnant women making informed choices about prenatal screening?Genetics in Medicine, 7: 332–8.CrossRefGoogle ScholarPubMed
Berg, M., Timmermans, D. R., ten Kate, L. P., Vugt, J. M. and Wal, G. (2006) Informed decision making in the context of prenatal screening. Patient Education and Counseling, 63: 110–17.CrossRefGoogle ScholarPubMed
White, C. (2008) Prime minister promises raft of screening tests. British Medical Journal, 336: 62–3.CrossRefGoogle Scholar
Wikler, D. (1999) Can we learn from eugenics?Journal of Medical Ethics, 25: 183–94.CrossRefGoogle ScholarPubMed
Wilfond, B. S. (1995) Screening policy for cystic fibrosis: the role of evidence. Hastings Center Report, 25(3, Suppl.): S21–S23.CrossRefGoogle Scholar
Wilfond, B. S. and Thompson, E. J. (2000) Models of public health genetic policy development. In Genetics and Public Health in the 21st Century: Using Genetic Information to Improve Health and Prevent Disease, ed. Khoury, M. J., Burke, W. and Thomson, E. J.. New York: Oxford, pp. 61–82.CrossRefGoogle Scholar
Wilson, J. M. G. and Jungner, G. (1968) Principles and practice of screening for disease. In Public Health Paper Number 34. Geneva: World Health Organization.Google Scholar
Wilson, R. M. (2000) Screening for breast and cervical cancer as a common cause for litigation. British Medical Journal, 320: 1352–3.CrossRefGoogle ScholarPubMed
Wynia, M. K. (2006) Routine screening: informed consent, stigma and the waning of HIV exceptionalism. American Journal of Bioethics, 6: 5–8.CrossRefGoogle ScholarPubMed

Accessibility standard: Unknown

Why this information is here

This section outlines the accessibility features of this content - including support for screen readers, full keyboard navigation and high-contrast display options. This may not be relevant for you.

Accessibility Information

Accessibility compliance for the PDF of this chapter is currently unknown and may be updated in the future.

Save book to Kindle

To save this book to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about saving to your Kindle.

Note you can select to save to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be saved to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Available formats
×

Save book to Dropbox

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Dropbox.

Available formats
×

Save book to Google Drive

To save content items to your account, please confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your account. Find out more about saving content to Google Drive.

Available formats
×