Ethical Issues in Preconception Genetic Carrier Screening

Overview

Journal Ups J Med Sci

Specialty General Medicine

Date 2016 Jul 9

PMID 27388477

Citations 15

Authors

Ulrik Kihlbom

Affiliations

Soon will be listed here.

Abstract

Population-based preconception genetic carrier screening programmes (PCS) with expanded panels are currently being developed in the Netherlands. This form of genetic screening for recessive traits differs from other forms of genetic testing and screening in that it is offered to persons not known to have an increased risk of being carriers of genetic traits for severe recessive diseases and in that they include tests for a large number of traits, potentially several hundred. This raises several ethical issues around justice, consequences, and autonomy. It will be argued that most of these ethical problems call for cautious reflection when setting up PCS and similar programmes within preconception care. It is moreover argued that it is ethically problematic to have an official aim and failing to mention possibly legitimate public aims that actually drive the development of PCS.

Citing Articles

Pregnancy Planning and Genetic Testing: Exploring Advantages, and Challenges.

Kristoffersson U, Johansson-Soller M Genes (Basel). 2024; 15(9).

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Preconception carrier screening as an alternative reproductive option prior to newborn screening for severe recessive disorders.

Rudnik-Schoneborn S, Zerres K Med Genet. 2024; 34(2):157-161.

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Societal implications of expanded universal carrier screening: a scoping review.

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Outcomes of Importance to Patients in Reproductive Genetic Carrier Screening: A Qualitative Study to Inform a Core Outcome Set.

Richardson E, McEwen A, Newton-John T, Crook A, Jacobs C J Pers Med. 2022; 12(8).

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Molecular autopsy by proxy in preconception counseling.

Alghamdi M, Alrasheedi A, Alghamdi E, Adly N, AlAali W, Alhashem A Clin Genet. 2021; 100(6):678-691.

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References

de Jong A, Dondorp W, Frints S, de Die-Smulders C, De Wert G . Advances in prenatal screening: the ethical dimension. Nat Rev Genet. 2011; 12(9):657-63. DOI: 10.1038/nrg3036. View

Janssens S, De Paepe A, Borry P . Attitudes of health care professionals toward carrier screening for cystic fibrosis. A review of the literature. J Community Genet. 2013; 5(1):13-29. PMC: 3890063. DOI: 10.1007/s12687-012-0131-z. View

Raz A, Vizner Y . Carrier matching and collective socialization in community genetics: Dor Yeshorim and the reinforcement of stigma. Soc Sci Med. 2008; 67(9):1361-9. DOI: 10.1016/j.socscimed.2008.07.011. View

Wilkinson S . Prenatal screening, reproductive choice, and public health. Bioethics. 2014; 29(1):26-35. PMC: 4315897. DOI: 10.1111/bioe.12121. View

Wilfond B, Fost N . The cystic fibrosis gene: medical and social implications for heterozygote detection. JAMA. 1990; 263(20):2777-83. View

Wise P . Transforming preconceptional, prenatal, and interconceptional care into a comprehensive commitment to women's health. Womens Health Issues. 2008; 18(6 Suppl):S13-8. DOI: 10.1016/j.whi.2008.07.014. View

Andermann A, Blancquaert I, Beauchamp S, Dery V . Revisiting Wilson and Jungner in the genomic age: a review of screening criteria over the past 40 years. Bull World Health Organ. 2008; 86(4):317-9. PMC: 2647421. DOI: 10.2471/blt.07.050112. View

Salihu H, Salinas A, Mogos M . The missing link in preconceptional care: the role of comparative effectiveness research. Matern Child Health J. 2012; 17(5):776-82. PMC: 3619010. DOI: 10.1007/s10995-012-1056-1. View

Zola I . Medicine as an institution of social control. Sociol Rev. 1972; 20(4):487-504. DOI: 10.1111/j.1467-954x.1972.tb00220.x. View

10.

Press N, Browner C . Risk, autonomy, and responsibility. Informed consent for prenatal testing. Hastings Cent Rep. 1995; 25(3):S9-12. View

11.

McQueen M . Some ethical and design challenges of screening programs and screening tests. Clin Chim Acta. 2001; 315(1-2):41-8. DOI: 10.1016/s0009-8981(01)00719-7. View

12.

Scully J . Disability and genetics in the era of genomic medicine. Nat Rev Genet. 2008; 9(10):797-802. DOI: 10.1038/nrg2453. View

13.

King D . The persistence of eugenics. Genethics News. 2001; No. 22:6-8. View

14.

Rogowski W, Grosse S, Schmidtke J, Marckmann G . Criteria for fairly allocating scarce health-care resources to genetic tests: which matter most?. Eur J Hum Genet. 2013; 22(1):25-31. PMC: 3865392. DOI: 10.1038/ejhg.2013.172. View

15.

Munthe C . A new ethical landscape of prenatal testing: individualizing choice to serve autonomy and promote public health: a radical proposal. Bioethics. 2014; 29(1):36-45. DOI: 10.1111/bioe.12126. View

16.

Tremain S . Reproductive freedom, self-regulation, and the government of impairment in utero. Hypatia. 2006; 21(1):35-53. View

17.

Verweij M . Medicalization as a moral problem for preventative medicine. Bioethics. 2001; 13(2):89-113. DOI: 10.1111/1467-8519.00135. View

18.

Zlotogora J . Population programs for the detection of couples at risk for severe monogenic genetic diseases. Hum Genet. 2009; 126(2):247-53. DOI: 10.1007/s00439-009-0669-y. View

19.

De Wert G, Dondorp W, Knoppers B . Preconception care and genetic risk: ethical issues. J Community Genet. 2011; 3(3):221-8. PMC: 3419287. DOI: 10.1007/s12687-011-0074-9. View

20.

William C, Alderson P, Farsides B . Too many choices? Hospital and community staff reflect on the future of prenatal screening. Soc Sci Med. 2002; 55(5):743-53. DOI: 10.1016/s0277-9536(01)00200-3. View