Alderson, P. (2001). Down’s syndrome: Cost, quality and value of life. Social Science and Medicine, 53(5), 627–638. https://doi.org/10.1016/S0277-9536(00)00365-8

Article  PubMed  Google Scholar 

Antonarakis, S. E., Skotko, B. G., Rafii, M. S., Strydom, A., Pape, S. E., Bianchi, D. W., Sherman, S. L., & Reeves, R. H. (2020). Downsyndrome. Nature Reviews Disease Primers, 6, 1–20. https://doi.org/10.1038/s41572-019-0143-7

Article  Google Scholar 

Asch, A. (2003). Disability equality and prenatal testing: Contradictory or compatible. Florida State University Law Review, 30(2), 315–342.

PubMed  Google Scholar 

Bailey, D. B., Lewis, M. A., Roche, M., & Powell, C. M. (2014). Family relations in the genomic era: Communicating about intergenerational transmission of risk for disability. Family Relations, 63(1), 85–100. https://doi.org/10.1111/fare.12054

Article  Google Scholar 

Barter, B., Hastings, R. P., Williams, R., & Huws, J. C. (2017). Perceptions and discourses relating to genetic testing: Interviews with people with Down syndrome. Journal of Applied Research in Intellectual Disabilities, 30(2), 395–406. https://doi.org/10.1111/jar.12256

Article  PubMed  Google Scholar 

Benston, S. (2016). CRISPR, a crossroads in genetic intervention: Pitting the right to health against the right to disability. Laws, 5(1), 5. https://doi.org/10.3390/laws5010005

Article  PubMed  PubMed Central  Google Scholar 

Bilkey, G. A., Burns, B. L., Coles, E. P., Bowman, F. L., Beilby, J. P., Pachter, N. S., Baynam, G., Dawkins, H. J. S., Nowak, K. J., & Weeramanthri, T. S. (2019). Genomic testing for human health and disease across the life cycle: Applications and ethical, legal, and social challenges. Frontiers in Public Health, 7, 40. https://doi.org/10.3389/fpubh.2019.00040

Article  PubMed  PubMed Central  Google Scholar 

Boardman, F. K. (2014). The expressivist objection to prenatal testing: The experiences of families living with genetic disease. Social Science and Medicine, 107, 18–25. https://doi.org/10.1016/j.socscimed.2014.02.025

Article  PubMed  Google Scholar 

Boardman, F. K., & Hale, R. (2018). How do genetically disabled adults view selective reproduction? Impairment, identity, and genetic screening. Molecular Genetics and Genomic Medicine, 6(6), 941–956. https://doi.org/10.1002/mgg3.463

Article  PubMed  PubMed Central  Google Scholar 

Boardman, F. K., Clark, C., Jungkurth, E., & Young, P. J. (2020). Social and cultural influences on genetic screening programme acceptability: A mixed-methods study of the views of adults, carriers, and family members living with thalassemia in the UK. Journal of Genetic Counselling, 29(6), 1026–1040. https://doi.org/10.1002/jgc4.1231

Article  Google Scholar 

Braun, V., & Clarke, V. (2022). Thematic analysis. Sage.

Book  Google Scholar 

Bruni, T., Mameli, M., Pravettoni, G., & Boniolo, G. (2012). Cystic fibrosis carrier screening in Veneto (Italy): An ethical analysis. Medicine, Health Care and Philosophy, 15(3), 321–328. https://doi.org/10.1007/s11019-011-9347-7

Article  PubMed  Google Scholar 

Bryant, L. D., Ahmed, S., Ahmed, M., Jafri, H., & Raashid, Y. (2011). ‘All is done by Allah’. Understandings of Down syndrome and prenatal testing in Pakistan. Social Science and Medicine, 72(8), 1393–1399. https://doi.org/10.1016/j.socscimed.2011.02.036

Article  PubMed  Google Scholar 

Bunnik, E. M., Kater-Kuipers, A., Galjaard, R. J. H., & de Beaufort, I. (2020). Why NIPT should be publicly funded. Journal of Medical Ethics, 46(11), 783–784. https://doi.org/10.1136/medethics-2020-106218

Article  PubMed  Google Scholar 

Çaha, H. (2014). Selective abortion: The new face of eugenics. Turkish Journal of Business Ethics, 7(2), 70–90. https://doi.org/10.12711/tjbe.2014.7.2.0163

Article  Google Scholar 

Carroll, J. C., Brown, J. B., Reid, A. J., & Pugh, P. (2000). Women’s experience of maternal serum screening. Canadian Family Physician, 46(3), 614–620.

PubMed  PubMed Central  Google Scholar 

Council of Europe. (1997). Convention for the protection of human rights and dignity of the human being with regard to the application of biology and medicine: Convention on human rights and biomedicine. https://rm.coe.int/168007cf98

Cunningham, A. (2019). Cleaner, CRISPR constitution: Germline editing and fundamental rights. William and Mary Bill of Rights Journal, 27(3), 877–909.

Google Scholar 

de Montgolfier, S. (2018). Revisiting the nondirective principle of genetic counseling in prenatal screening. In S. Hostiuc (Ed.), Clinical ethics at the crossroads of genetic and reproductive technologies (pp. 99–111). Academic Press. https://doi.org/10.1016/B978-0-12-813764-2.00005-2

de Paor, A. (2016). Disability and genetics: New forms of discrimination? In P. Blanck & E. Flynn (Eds.), Routledge handbook of disability law and human rights (pp. 227–243). Routledge.

Google Scholar 

de Paor, A., & Blanck, P. (2016). Precision medicine and advancing genetic technologies—Disability and human rights perspectives. Laws, 5(3), 36. https://doi.org/10.3390/laws5030036

Article  Google Scholar 

Delhove, J., Osenk, I., Prichard, I., & Donnelley, M. (2020). Public acceptability of gene therapy and gene editing for human use: A systematic review. Human Gene Therapy, 31, 20–46. https://doi.org/10.1089/hum.2019.197

Article  PubMed  Google Scholar 

Doble, B., Schofield, D., Evans, C. A., Groza, T., Mattick, J. S., Field, M., & Roscioli, T. (2020). Impacts of genomics on the health and social costs of intellectual disability. Journal of Medical Genetics, 57(7), 479–486. https://doi.org/10.1136/jmedgenet-2019-106445

Article  PubMed  Google Scholar 

Donnelly, J. (2013). Universal human rights in theory and practice. Cornell University Press.

Book  Google Scholar 

Doxzen, K., & Halpern, J. (2020). Focusing on human rights: A framework for CRISPR germline genome editing ethics and regulation. Perspectives in Biology and Medicine, 63(1), 44–53. https://doi.org/10.1353/pbm.2020.0003

Article  PubMed  Google Scholar 

Engel, G. L. (1977). The need for a new medical model: A challenge for biomedicine. Science, 196(4286), 129–136. https://doi.org/10.1126/science.847460

Article  PubMed  Google Scholar 

Engel, G. L. (1981). The clinical application of the biopsychosocial model. The Journal of Medicine and Philosophy, 6(2), 101–124. https://doi.org/10.1093/jmp/6.2.101

Article  PubMed  Google Scholar 

Faragher, R. (2019). Research in the field of Down syndrome: Impact, continuing need, and possible risks from the New Eugenics. Journal of Policy and Practice in Intellectual Disabilities, 16(2), 130–133. https://doi.org/10.1111/jppi.12305

Article  Google Scholar 

Farrell, P. M., White, T. B., Ren, C. L., Hempstead, S. E., Accurso, F., Derichs, N., Howenstine, M., McColley, S. A., Rock, M., Rosenfeld, M., Sermet-Gaudelus, I., Southern, K. W., Marshall, B. C., & Sosnay, P. R. (2017). Diagnosis of cystic fibrosis: Consensus guidelines from the cystic fibrosis foundation. The Journal of Pediatrics, 181, S4–S15. https://doi.org/10.1016/j.jpeds.2016.09.064

Article  Google Scholar 

Guon, J., Wilfond, B. S., Farlow, B., Brazg, T., & Janvier, A. (2014). Our children are not a diagnosis: The experience of parents who continue their pregnancy after a prenatal diagnosis of trisomy 13 or 18. American Journal of Medical Genetics Part A, 164(2), 308–318. https://doi.org/10.1002/ajmg.a.36298

Article  Google Scholar 

Haegele, J. A., & Hodge, S. (2016). Disability discourse: Overview and critiques of the medical and social models. Quest, 68(2), 193–206. https://doi.org/10.1080/00336297.2016.1143849

Article  Google Scholar 

Hickerton, C. L., Aitken, M., Hodgson, J., & Delatycki, M. B. (2012). “Did you find that out in time?” New life trajectories of parents who choose to continue a pregnancy where a genetic disorder is diagnosed or likely. American Journal of Medical Genetics Part A, 158(2), 373–383. https://doi.org/10.1002/ajmg.a.34399

Article  Google Scholar 

Hofmann, B. (2017). You are inferior! Revisiting the Expressivist Argument. Bioethics, 31(7), 505–514. https://doi.org/10.1111/bioe.12365

Article  PubMed  Google Scholar 

Karpin, I. A. (2016). Protecting the future well: Access to preconception genetic screening and testing and the right not to use it. Griffith Law Review, 25(1), 71–86. https://doi.org/10.1080/10383441.2016.1203274

Article  Google Scholar 

Kazou, K. (2017). Analysing the definition of disability in the UN convention of the rights of persons with disabilities: Is it really based on a ‘social model’ approach? International Journal of Mental Health and Capacity Law, 25–48. https://doi.org/10.19164/ijmhcl.v2017i23

Kemper, J. M., Gyngell, C., & Savulescu, J. (2019). Subsidizing PGD: The moral case for funding genetic selection. Journal of Bioethical Inquiry, 16(3), 405–414. https://doi.org/10.1007/s11673-019-09932-2

Article  PubMed  PubMed Central  Google Scholar 

Kibel, M., & Vanstone, M. (2017). Reconciling ethical and economic conceptions of value in health policy using the capabilities approach: A qualitative investigation of non-invasive prenatal testing. Social Science and Medicine, 195, 97–104. https://doi.org/10.1016/j.socscimed.2017.11.024

Article  PubMed  Google Scholar 

Kumar, M. M. (2008). Implications of the 2007 American College of Obstetricians and Gynaecologists guidelines for prenatal testing: A sociological assessment (Publication No. 60400685) [Master’s thesis, Sarah Lawrence College]. Proquest Dissertations and Theses Global.

Lemke, T., & Rüppel, J. (2019). Social dimensions of preimplantation genetic diagnosis: A literature review. New Genetics and Society, 38(1), 80–112. https://doi.org/10.1080/14636778.2018.1549983

Article  Google Scholar 

Li, H., Yang, Y., Hong, W., Huang, M., Wu, M., & Zhao, X. (2020). Applications of genome editing technology in the targeted therapy of human diseases: Mechanisms, advances and prospects. Signal Transduction and Targeted Therapy, 5(1), 1. https://doi.org/10.1038/s41392-019-0089-y

Article  PubMed  PubMed Central  Google Scholar 

Lord, J. E. (2013). Screened out of existence: The convention on the rights of persons with disabilities and selective screening policies. International Journal of Disability, Community & Rehabilitation, 12(2). http://www.ijdcr.ca/VOL12_02/articles/lord.shtml

Lord, J. E. (2014). Accommodating genes: Disability, discrimination and international human rights law. In G. Quinn, A. de Paor, & P. Blanck (Eds.), Genetic discrimination (pp. 226–242). Routledge. https://doi.org/10.4324/9780203674299

Chapter  Google Scholar 

Lu, J., Webber, W. B., Romero, D., & Chirino, C. (2018). Changing attitudes toward people with disabilities using public media: An experimental study. Rehabilitation Counselling Bulletin, 61(3), 175–186. https://doi.org/10.1177/0034355217700820

Article  Google Scholar 

MacKellar, C. (2021). Why human germline genome editing is incompatible with equality in an inclusive society. The New Bioethics, 27(1), 19–29.

Article  PubMed  Google Scholar