Abstract
This chapter provides an overview of the current legal and policy landscape governing genetic testing in the context of insurance and employment in the UK. It focuses on the characteristic features of the UK regulatory regime, namely the decision to avoid including “genetic characteristics” within the general anti-discrimination legislation, and instead to regulate the use of genetic test results by insurers and employers through soft law guidance documents. Other relevant guidance documents and statutes are also considered. The overall adequacy of the UK regime, and the degree to which it satisfactorily reconciles the divergent interests of the various stakeholders, are examined critically.
This is a preview of subscription content, log in via an institution to check access.
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
Similar content being viewed by others
Notes
- 1.
The NHS is the public national healthcare system for the United Kingdom. Funded through the general taxation system and overseen by the Department of Health, the system provides healthcare to every legal resident in the UK.
- 2.
Human Genetics Commission (2007).
- 3.
Health and Safety Executive (2007).
- 4.
BBC News (2016).
- 5.
HM Government and the Association of British Insurers (2018).
- 6.
The Information Commissioner’s Office (2011).
- 7.
Data Protection Act 1998 (c 29). At the time of writing, the ICO is working on updating the Employment Practices Code, as necessitated by the repeal and replacement of the Data Protection Act 1998 by the Data Protection Act 2018.
- 8.
Part 4.5.3 of the ICO Code states: “Only use genetic testing to obtain information where it is clear that a worker with a particular, detectable genetic condition is likely to pose a serious safety risk to others or where it is known that a specific working environment or practice might pose specific risks to workers with particular genetic variations.”
- 9.
HM Government and the Association of British Insurers (2018), p. 5.
- 10.
Joint Committee on Medical Genetics (2011).
- 11.
23andMe (2017).
- 12.
UK Biobank (2010).
- 13.
S and Marper v United Kingdom (2009) 48 EHRR 50.
- 14.
See Department for Communities and Local Government (2007), pp. 132–134.
- 15.
UK Government (2008), pp. 180–184.
- 16.
Equality Act 2010 (c 15), s 6.
- 17.
Schedule 3, Part 5, s 21 of the Equality Act.
- 18.
Equality Act 2010 (c 15), s 9.
- 19.
Leigh (1996).
- 20.
See generally Campbell v Mirror Group Newspapers [2004] 2 All ER 995.
- 21.
Data Protection Act 2018 (c 12), Schedule I, Part I.
- 22.
Regulation (EU) 2016/679 of the European Parliament and of the Council of 27 April 2016 on the protection of natural persons with regard to the processing of personal data and the free movement of such data, and repealing Directive 95/46/EC, OJ L 119/1, 4 May 2016.
- 23.
Transposed into UK law by the Human Rights Act 1998 (c 42), Schedule I, Part I, Art 8.
- 24.
Human Rights Act 1998 (c 42), Schedule I, Part I, Art 8(2).
- 25.
General Medical Council (2017a).
- 26.
Joint Committee on Medical Genetics (2011).
- 27.
General Medical Council (2017b).
- 28.
British Medical Association (2009).
- 29.
British Medical Association and the Association of British Insurers (2010).
- 30.
The Information Commissioner’s Office (2011), p. 83.
- 31.
HM Government and the Association of British Insurers (2018), p. 10.
- 32.
British Medical Association and the Association of British Insurers (2010), p. 12.
References
23andMe (2017) Consent and Legal Agreement. https://www.23andme.com/en-gb/about/consent/?version=1.3. Accessed 26 Nov 2018
BBC News (2016) DNA testing at work: one company’s unusual policy. 3 December 2016. http://www.bbc.co.uk/news/av/business-38183937/dna-testing-at-work-one-company-s-unusual-policy. Accessed 26 Nov 2018
British Medical Association (2009) Access to Medical Reports: Guidance from the BMA Medical Ethics Department. https://www.bma.org.uk/advice/employment/ethics/confidentiality-and-health-records/access-to-medical-reports. Accessed 26 Nov 2018
British Medical Association and the Association of British Insurers (2010) Medical Information and Insurance: Joint Guidelines from the British Medical Association and the Association of British Insurers. http://www.financial-ombudsman.org.uk/news/pdf/medical-information-and-insurance.pdf. Accessed 26 Nov 2018
Department for Communities and Local Government (2007) A framework for fairness: proposals for a single Equality Bill for Great Britain. https://webarchive.nationalarchives.gov.uk/20120919212654/http://www.communities.gov.uk/documents/corporate/pdf/325332.pdf. Accessed 26 Nov 2018
General Medical Council (2017a) Confidentiality: Good Practice in Handling Patient Information. https://www.gmc-uk.org/-/media/documents/Confidentiality_good_practice_in_handling_patient_information___English_0417.pdf_70080105.pdf. Accessed 26 Nov 2018
General Medical Council (2017b) Confidentiality: Disclosing Information for Employment, Insurance and Similar Purposes. http://www.gmc-uk.org/guidance/ethical_guidance/30665.asp. Accessed 26 Nov 2018
Health and Safety Executive (2007) Genetic testing in the workplace. http://www.hse.gov.uk/horizons/assets/documents/genetictesting.pdf. Accessed 26 Nov 2018
HM Government and the Association of British Insurers (2018) Code on genetic testing and insurance: a voluntary code of practice between HM Government and the Association of British Insurers on the role of genetic tests in insurance. https://www.abi.org.uk/globalassets/files/publications/public/genetics/code-on-genetic-testing-and-insurance-final.pdf. Accessed 10 Mar 2019
Human Genetics Commission (2007) Human Genetics Commission response to the Discrimination Law Review consultation, a framework for fairness: proposals for a single Equality Bill for Great Britain. https://webarchive.nationalarchives.gov.uk/20120504102334/http://www.hgc.gov.uk/Client/document.asp?DocId=134&CAtegoryId=4. Accessed 10 Mar 2019
Joint Committee on Medical Genetics (2011) Consent and Confidentiality in Clinical Genetic Practice: Guidance on Genetic Testing and Sharing Genetic Information. http://www.bsgm.org.uk/media/678746/consent_and_confidentiality_2011.pdf. Accessed 26 Nov 2018
Leigh S (1996) The freedom to underwrite. https://www.actuaries.org.uk/documents/freedom-underwrite. Accessed 26 Nov 2018
The Information Commissioner’s Office (2011) The Employment Practices Code. https://ico.org.uk/media/for-organisations/documents/1064/the_employment_practices_code.pdf. Accessed 26 Nov 2018
UK Biobank (2010) Information leaflet. https://www.ukbiobank.ac.uk/wp-content/uploads/2011/06/Participant_information_leaflet.pdf?phpMyAdmin=trmKQlYdjjnQIgJ%2CfAzikMhEnx6. Accessed 26 Nov 2018
UK Government (2008) The Equality Bill: government response to the consultation. https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/238707/7454.pdf. Accessed 26 Nov 2018
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2020 Springer Nature Switzerland AG
About this chapter
Cite this chapter
Porter, G. (2020). Genetic Testing, Insurance and Employment in the UK: Is the Regulatory Regime Fit for Purpose?. In: Khoury, L., Blackett, A., Vanhonnaeker, L. (eds) Genetic Testing and the Governance of Risk in the Contemporary Economy. Ius Comparatum - Global Studies in Comparative Law, vol 34. Springer, Cham. https://doi.org/10.1007/978-3-030-43699-5_14
Download citation
DOI: https://doi.org/10.1007/978-3-030-43699-5_14
Published:
Publisher Name: Springer, Cham
Print ISBN: 978-3-030-43698-8
Online ISBN: 978-3-030-43699-5
eBook Packages: Law and CriminologyLaw and Criminology (R0)