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Improving population health or the population itself? Health technology assessment and our genetic future

Published online by Cambridge University Press:  28 May 2004

Ken Bassett ,
Patricia M. Lee ,
Carolyn J. Green ,
Lisa Mitchell  and
Arminée Kazanjian
Ken Bassett
Affiliation:
BC Office of Health Technology Assessment, University of British Columbia
Patricia M. Lee
Affiliation:
BC Centre of Excellence for Women's Health, BC Women's Hospital & Health Centre
Carolyn J. Green
Affiliation:
BC Office of Health Technology Assessment, University of British Columbia
Lisa Mitchell
Affiliation:
University of Victoria
Arminée Kazanjian
Affiliation:
BC Office of Health Technology Assessment, University of British Columbia
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Abstract

The province of British Columbia (BC), Canada is developing its first population-wide prenatal genetic screening program, known as triple-marker screening (TMS). TMS, initiated with a simple blood test, is most commonly used to screen for fetuses with the chromosomal abnormality known as Down syndrome or neural tube disorders. Women testing TMS-positive are offered diagnostic amniocentesis and, if the diagnosis is confirmed, selective second-trimester abortion. The project described in this study was initiated to address the broad range of issues arising from this testing technology and provides an example of the new type of health technology assessment (HTA) contribution emerging (and likely to become increasing necessary) in health policy development. With the advent of prenatal genetic screening programs, would-be parents gain the promise of identifying target conditions and, hence, the option of selective abortion of affected fetuses. There is considerable awareness that these developments pose challenges in every dimension (ethical, political, economic, and clinical) of the health-care environment. In the effort to construct an appropriate prenatal screening policy, therefore, administrators have understandably sought guidance from within the field of HTA. The report authors concluded that, within the restricted path open to it, the role of government is relatively clear. It has the responsibility to maintain equal access to prenatal testing, as to any other health service. It should also require maintenance of medical standards and evaluation of program performance. At the same time, policy-makers need actively to support those individuals born with disabilities and their families.

Keywords

Prenatal genetic testingHealth policyHealth technology assessmentEugenics
Type
Research Article
Information
International Journal of Technology Assessment in Health Care , Volume 20 , Issue 2 , April 2004 , pp. 106 - 114
Copyright
© 2004 Cambridge University Press

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References

Asch A. 1999 Prenatal diagnosis and selective abortion: A challenge to practice and policy. Am J Public Health. 89: 1649– 1657.Google Scholar
Baillie C, Hewison J. 1999 Antenatal screening: Obtaining selective consent to scanning, rather than screening, is possible. Letter. BMJ. 318: 805.Google Scholar
Bassett KL, Lee P, Green CJ, et al. 2000 Triple marker screening in British Columbia: Current practice, future options. Final Report made to Minister's Advisory Council on Women's Health. Vancouver, BC: University of BC, BC Office of Health Technology Assessment Report 00:14T.
Carroll JC, Reid AJ, Woodward CA, et al. 1997 Ontario Maternal Serum Screening program: Practices, knowledge and opinion of health care providers. CMAJ. 156: 775– 784.Google Scholar
Chodirker BN, Evans JA. 1993 Maternal serum AFP screening programs: The Manitoba experience. In: Current practice of prenatal diagnosis in Canada, vol. 13. Ottawa: Royal Commission on New Reproductive Technologies 536– 610.
Dick PT. 1996 Periodic health examination, 1996 update: 1: Prenatal screening for and diagnosis of Down syndrome: Canadian Task Force on the periodic health examination. CMAJ. 154: 465– 479.Google Scholar
EUCROMIC Workshop. 1997 Proceedings (1996: Paris) Prenatal diagnosis in Europe: Proceedings of an EUCROMIC Workshop, Paris, May 23-24, 1996. Eur J Hum Genet. 5 (Suppl 1): 1– 90.
Gill M, Murday V, Slack J. 1987 An economic appraisal of screening for Down syndrome in pregnancy using maternal age and serum alpha feto-protein concentration. Soc Sci Med. 24: 725– 731.Google Scholar
Green CJ, Hadorn D, Bassett K, Kazanjian A. 1996 Routine ultrasound imaging in pregnancy: How evidence-based are the guidelines? Vancouver, BC: BC Office of Health Technology Assessment Aug;96: 2D.
Howe DT, Gornall R, Wellesley D, Boyle T, Barber J. 2000 Six year survey of screening for Down's syndrome by maternal age and mid-trimester ultrasound scans. BMJ. 320: 606– 610.Google Scholar
Lee PM, Sroka H. 1999 The missing voices in the BC experience of maternal serum screening. A Report.
Lippman A. 1999 Embodied knowledge and making sense of prenatal diagnosis. J Genet Counseling. 8: 255– 274.Google Scholar
Merz B. 1987 Matchmaking scheme solves Tay-Sacks problem. JAMA. 258: 2636– 2639.Google Scholar
Mitchell L. 1994 The routinization of the other: Ultrasound, women and the fetus. In: Basen G, Eichler M, Lippman S, eds. Misconceptions: The social construction of choice and the new reproductive technologies, vol. 2. Hull, Quebec, Canada: Voyageur Press 146– 160.
Palomaki GE, Knight GJ, McCarthy JE, Haddow JE, Donhowe JM. 1997 Maternal serum screening for Down syndrome in the United States: A 1995 survey. Am J Obstet Gynecol. 176: 1046– 1051.Google Scholar
Permaul-Woods JA, Carroll JC, Reid AJ, et al. 1999 Going the distance: The influence of practice location on the Ontario maternal serum screening program. CMAJ. 161: 381– 385.Google Scholar
Press N, Browner C. 1998 Characteristics of women who refuse an offer of prenatal diagnosis: Data from the California maternal serum alpha fetoprotein blood test experience. Am J Med Genet. 78: 433– 445.Google Scholar
Press N, Browner C. 1993 Collective fictions: Similarities in reasons for accepting maternal serum alpha-fetoprotein screening among women of diverse ethnic and social class backgrounds. Fetal Diagn Ther. 8 (Suppl 1): 97– 106.Google Scholar
Rapp R. 1993 Accounting for amniocentesis. In: Lindenbaum S, Lock M, eds. Knowledge, power, and practice: The anthropology of everyday life. Berkeley, CA: University of California Press 55– 78.
Rapp R. 1993 Sociocultural differences in the impact of amniocentesis: An anthropological research report. Fetal Diagn Ther. 8 (Suppl 1): 90– 96.Google Scholar
Royal Commission on New Reproductive Technologies. 1993 Prenatal Diagnosis for Congenital Anomalies and Genetic Disease. In: Proceed with care. Final report of the Royal Commission on New Reproductive Technologies, vol. 2. 777.
Royal Commission on New Reproductive Technologies. 1993 Prenatal Diagnosis for Congenital Anomalies and Genetic Disease. In: Proceed with care. Final report of the Royal Commission on New Reproductive Technologies, vol. 2. 804.
Sadovnick AD, Baird PA. 1983 A cost-benefit analysis of a population screening programme for neural tube defects. Prenat Diagn. 3: 117– 126.Google Scholar
Sadovnick AD, Baird PA. 1981 A cost-benefit analysis of prenatal detection of Down's syndrome and neural tube defects in older mothers. Am J Med Genet. 10: 367– 378.Google Scholar
Santalahti P. 1994 Literature review. Prenatal screening in Finland: Availability and women's decision-making and experiences. Research report. Stakes National Research and Development Centre for Welfare and Health 13.
Sheldon TA, Simpson J. 1991 Appraisal of a new scheme for prenatal screening for Down's syndrome. BMJ. 302: 1133– 1136.Google Scholar
Smith DK, Shaw RW, Marteau TM. 1994 Informed consent to undergo serum screening for Down's syndrome: The gap between policy and practice. BMJ. 309: 776.Google Scholar
Stephenson P, Mitchell L. 1998 Social and cultural determinants of parental experiences with ultrasound detected foetal anomalies. British Columbia: British Columbia Medical Services Foundation Grant No. BCM98-0012.
Tabor A, Madsen M, Obel EB. 1986 Randomized controlled trial of genetic amniocentesis in 4606 low-risk women. Lancet. 1: 1287– 1292.Google Scholar
Tudiver S. 1993 Manitoba voices: A qualitative study of women's experiences with technology in pregnancy. Prenatal diagnosis: Background and impact on individuals. Ottawa, Ontario: Royal Commission on New Reproductive Technologies 347– 460.
Wald NJ, Kennard A, Hackshaw A, McGuire A. 1998 Antenatal screening for Down's syndrome. Health Technol Assess. 2: 1– 112.Google Scholar
Wald NJ, Watt HC, Hackshaw AK. 1999 Integrated screening for Down's syndrome based on tests performed during the first and second trimesters. N Engl J Med. 341: 461– 467.Google Scholar