Should we outlaw genetic discrimination?

9 May 2012 by

The late US law Professor Paul Miller reflected recently that Beethoven, Stephen Hawking and Elton John were examples of individuals whom, if they had been tested for serious genetic conditions at the start of their careers, may have been denied employment in the fields in which they later came to excel.

Earlier this month the Association of British Insurers announced the latest extension on the moratorium on the use of genetic test results for insurance purposes. But is this “Concordat” sufficient protection? Genetic technologies are becoming increasingly available and profound questions are arising in relation to life and health insurance and employability as genetic screening becomes cheaper and widespread.

According to the Human Genetics Commission (HGC)

The advent of cheap whole-genome sequencing, and greatly reduced costs for genetic tests in general, will provide the platform for genetic testing to be used for novel and unpredicted purposes. (Report on The Concept of Genetic Discrimination, Aril 2011)

The HGC is in no doubt that genetic discrimination may be occurring already, that there is the potential for it to occur more in the future and that existing legislation will not protect against all the possible situations where discrimination on the grounds of genetic characteristics could arise. So is it necessary to bring in legislation to protect people from these scientific breakthroughs that can identify vulnerability to specific diseases? The US has partly responded to this issue in its 2008 Genetic Information Nondiscrimination Act (GINA), which explicitly makes genetic discrimination illegal and addresses discrimination in health insurance and employment practices. But GINA does not address adverse selection in life insurance, where concerns are more serious because there is no natural limit on payouts, and because the product is regarded as more discretionary than health insurance. In any event, why should insurers be prevented from calibrating their risks in this area? After all, the government currently recognises the needs of the insurance sector to increase levels of premiums and even not to offer insurance on grounds of age in certain circumstances; why not predisposition to certain disorders, if they are as predictive as age? Actuarial fairness and fairness before the law come fatally asunder at this point.

The HGC has recommended that government should consider in detail the possible need for separate legislation to prevent genetic discrimination, although opinion is divided on the question whether existing statutory protections against unfair discrimination adequately address concerns about possible discriminatory treatment on the grounds of genetics.

Discrimination laws – enough already?

Of course we already have laws combating discrimination on grounds of race, religion or belief, disability, age or sexual orientation in the context of employment and occupation. The Disability Discrimination Act 1995 is now absorbed into the 2010 Equality Act, which sets the anti-discrimination agenda for the foreseeable future. But will even the broadest provisions of this Act capture what may loosely be termed genetic discrimination? In 2002 the statutory body charged with monitoring the Disability Discrimination Act recommended that the Act should be extended to people who have a genetic predisposition to an impairment with regard to insurance, making it be unlawful to require an individual to undergo a genetic test or to disclose the results of a genetic test unless the scientific validity of the test had been established by an impartial body, and employees should not be obliged to take genetic tests for employment purposes. No such extension has been adopted.

But what if an employer were to treat someone less favourably because of a genetic predisposition, revealed in a reliable test? They would presumably be doing so because of a fear that the individual would develop a disability and it is therefore arguable that they are treating that person less favourably on grounds of disability. The employer, when faced with a claim under the Equality Act, is likely to contend that it is not because of an erroneous belief that an individual is disabled that they are treating an individual less favourably, but because of the risk of their developing a disability. Would this be covered by the prohibition on “direct discrimination”, or would the employer be justified under the Act?   There are no cases even under the US GINA legislation to guide the UK courts in such a situation – plenty of discrimination claims have been  made under GINA and related state laws but they have settled out of court.

The other basis for arguing that there should be pre-emptive legislation on this front is the argument that the mere fear of genetic discrimination may be cause people to be reluctant to take advantage of the growing array of genetic tests. The HGC in its Report claims to have anecdotal evidence that people have been discouraged from taking medical tests or participating in potentially beneficial research for fear that the results of these genetic tests may be used to their disadvantage. But is fear a sound reason for legislation? Probably not, although it may add some weight to the proposal that special protection on grounds of genetic differences is required.

Problems of definition

It is all too easy to object to the concept of “genetic discrimination” and leave it at that. But if a specific law were to be framed prohibiting such discrimination, it would have to be carefully defined and separated from a whole range of conceptually similar data, such as family history or lifestyle.  A phrase such as “genetic discrimination” would otherwise fail for uncertainty or inadequacy. An example given in this debate is the illogicality of allowing an airline company to reject an application from a candidate pilot on the grounds of family history of increased sudden cardiac death syndrome, whilst making it illegal to do the same because a genetic test had revealed a genotype which equated to the same level of risk. As one commentator pointed out as long ago as 1994, in a paper on the use of genetic information on private insurers:

It has been common practice for insurers to engage in risk classification, looking at characteristics such as age, individual and family health history, health status, occupation, serum cholesterol, and alcohol and tobacco use. Insurers view genetic information as simply “one additional factor” to be evaluated in the underwriting process

The other point is the obvious one that discrimination isn’t always bad: separating people on the grounds of genetic information for different medical treatment has a sound scientific basis, whereas in other contexts this differentiation is objectionable. The problem is how to distinguish discrimination which is not justified from the justified and appropriate discrimination of genetically different types.


The difficulties of implementing such legislation will be legion. For one thing, to allow insurers and potential employers access to family history but not to genetic test information would be nonsensical. Secondly, it will be rare that a genetic biomarker alone will be a sufficiently clear predictor of future health risks; as this science progresses, the genetic data will form only a small component of a complex bundle of information including environmental factors – which bits should employers and insurers not rely on in making their assessments? As one paper in Nature asked:

If we wish to eliminate genetic discrimination in employment, without endorsing questionable distinctions, and without risking a system in which protections against discrimination are vitiated by ease of access to information and the difficulties involved in policing its use, we need to prohibit employers from obtaining all non-job-related medical information. (Mark A Rothstein and Mary R Anderlik, 2001)

Related to the problem of enforcement of such legislation is the question of redress. If the use of genetic data were to be considered unfair and therefore illegal discrimination, how is this unfair treatment to be remedied? Current anti discrimination legislation in the fields of race or religion requires equality of treatment to achieve parity of outcome. Disability discrimination is different in that it requires unequal treatment or reasonable adjustments to be made on behalf of the disabled person, to achieve parity of outcome. How would this work out in the case of genetic discrimination based a disposition for something that is going to happen in the future, such as diabetes or osteoperosis? Neither parity nor non-parity of outcome quite makes sense here.  The appropriateness of a remedy depends on the moral basis for objecting to such discrimination. Some people find it objectionable that discrimination should be based on inherited and immutable characteristics. Others take a more pragmatic view, that people should not be treated now on the basis of a possible future which may or may not materialise.

A related objection to treating discrimination based on genetic information separately is that increases the stigma attached to genetic conditions and lends legitimacy to genetic reductionism and determinism. People tend to believe, rightly or wrongly, that because genetic conditions are singled out for protection, they must be particularly shameful.

A separate prohibition on genetic discrimination

… is probably never going to be viable. The potential for genetic discrimination is impossibly wide. It is relevant to every  commercial transaction where one party has an economic interest in the future health of the other party, such as the granting of mortgages or commercial loans. But it also extends to non-economic relationships wherever there is an interest in explaining or predicting an individual’s current or future health, such as adoption, child custody, personal injury law, or  where future behaviour is important, such as in the fields of education or criminal law.

Of course it involves issues of autonomy and privacy, under Article 8 of the European Convention and a range of important international rights instruments, including, specifically, the Council of Europe Convention on Human Rights and Biomedicine Arts 1 and 11.  But insurers have to be allowed to base their decisions on rational risk assessments, and every time you are required to take a cholesterol test for life insurance cover your autonomy and privacy are unquestionably infringed in the sense that control over your own body has been eroded. Nobody in their right minds would contemplate objecting to such a demand. But maybe the acceptability of these practices will come under fresh scrutiny once they open the way to screening that reveals to the unwilling individual a future crippled by degenerative disease or the probability of passing on some fatal disorder to their children.

Sign up to free human rights updates by email, Facebook, Twitter or RSS

Read more:


  1. “why should insurers be prevented from calibrating their risks in this area? After all, the government currently recognises the needs of the insurance sector to increase levels of premiums and even not to offer insurance on grounds of age in certain circumstances; why not predisposition to certain disorders, if they are as predictive as age? Actuarial fairness and fairness before the law come fatally asunder at this point.”

    Do they really? Hopefully the audience recognises the difference between fact and opinion.

  2. Rachit Buch says:

    Thanks for such an interesting and measured piece. I did my degree dissertation on the regulation genetic testing in 2008 and it seems that many of the issues remain the same. It really is an issue with strong arguments for and against increased regulation.

    To me, these problems can seem intractable. Though I was struck by the Nuffield Council on Bioethics “intervention ladder” in relation to public health (, fully explained here

    I think that there’s much to learn from the ladder when looking at multi-disciplinary, population-wide regulatory problems such as the one you’ve highlighted.

Comments are closed.

Welcome to the UKHRB

This blog is run by 1 Crown Office Row barristers' chambers. Subscribe for free updates here. The blog's editorial team is:
Commissioning Editor: Jonathan Metzer
Editorial Team: Rosalind English
Angus McCullough QC David Hart QC
Martin Downs
Jim Duffy

Free email updates

Enter your email address to subscribe to this blog for free and receive weekly notifications of new posts by email.




7/7 Bombings 9/11 A1P1 Aarhus Abortion Abu Qatada Abuse Access to justice adoption AI air pollution air travel ALBA Allergy Al Qaeda Amnesty International animal rights Animals anonymity Article 1 Protocol 1 Article 2 article 3 Article 4 article 5 Article 6 Article 8 Article 9 article 10 Article 11 article 13 Article 14 article 263 TFEU Artificial Intelligence Asbestos Assange assisted suicide asylum asylum seekers Australia autism badgers benefits Bill of Rights biotechnology birds directive blogging Bloody Sunday brexit Bribery British Waterways Board Catholic Church Catholicism Chagos Islanders Charter of Fundamental Rights child protection Children children's rights China christianity circumcision citizenship civil liberties campaigners civil partnerships climate change clinical negligence closed material procedure Coercion Cologne Commission on a Bill of Rights common buzzard common law communications competition confidentiality confiscation order conscientious objection consent conservation constitution contact order contempt of court Control orders Copyright coronavirus costs costs budgets Court of Protection crime criminal law Criminal Legal Aid criminal records Cybersecurity Damages data protection death penalty declaration of incompatibility defamation deficit DEFRA Democracy village Dennis Gill dentist's registration fees deportation deprivation of liberty derogations Detention devolution Dignitas dignity Dignity in Dying diplomacy director of public prosecutions disability Disability-related harassment disabled claimants disciplinary hearing disclosure Discrimination Discrimination law disease divorce DNA doctors does it matter? domestic violence Dominic Grieve don't ask don't ask don't tell don't tell Doogan and Wood double conviction DPP guidelines drones duty of care ECHR economic and social rights economic loss ECtHR Education election Employment Environment environmental information Equality Act Equality Act 2010 ethics Ethiopia EU EU Charter of Fundamental Rights EU costs EU law European Convention on Human Rights European Court of Human Rights European Court of Justice european disability forum European Sanctions Blog Eurozone euthanasia evidence Exclusion extra-jurisdictional reach of ECHR extra-territoriality extradition extradition act extradition procedures extradition review extraordinary rendition Facebook Facebook contempt facial recognition fair procedures Fair Trial faith courts fake news Family family courts family law family legal aid Family life fatal accidents act Fertility fertility treatment FGM fisheries fishing rights foreign criminals foreign office foreign policy France freedom of assembly Freedom of Association Freedom of Expression freedom of information Freedom of Information Act 2000 freedom of movement freedom of speech free speech game birds gangbo gang injunctions Garry Mann gary dobson Gary McFarlane gay discrimination Gay marriage gay rights gay soldiers Gaza Gaza conflict Gender General Dental Council General Election General Medical Council genetic discrimination genetic engineering genetic information genetics genetic testing Google government Grenfell grooming Gun Control gwyneth paltrow gypsies habitats habitats protection Halsbury's Law Exchange hammerton v uk happy new year harassment Hardeep Singh Haringey Council Harkins and Edwards Health healthcare health insurance Heathrow heist heightened scrutiny Henry VII Henry VIII herd immunity hereditary disorder High Court of Justiciary Hirst v UK HIV HJ Iran HM (Iraq) v The Secretary of state for the home department [2010] EWCA Civ 1322 Holder holkham beach holocaust homelessness Home Office Home Office v Tariq homeopathy hooding Hounslow v Powell House of Commons Housing housing benefits Howard League for Penal Reform how judges decide cases hra damages claim Hrant Dink HRLA HS2 hs2 challenge hts Human Fertilisation and Embryology Act Human Fertilisation and Embryology Authority human genome human rights Human Rights Act Human Rights Act 1998 human rights advocacy Human rights and the UK constitution human rights commission human rights conventions human rights damages Human Rights Day human rights decisions Human Rights Information Project human rights news Human Rights Watch human right to education human trafficking hunting Huntington's Disease HXA hyper injunctions Igor Sutyagin illegality defence immigration Immigration/Extradition Immigration Act 2014 immigration appeals immigration detention immigration judge immigration rules immunity increase of sanction India Indonesia Infrastructure Planning Committee inherent jurisdiction inherited disease Inhuman and degrading treatment injunction Inquest Inquests insult insurance insurmountable obstacles intelligence services act intercept evidence interception interests of the child interim remedies international international conflict international criminal court international humanitarian law international human rights international human rights law international law international treaty obligations internet internet service providers internment internship inuit investigation investigative duty in vitro fertilisation Iran iranian bank sanctions Iranian nuclear program Iraq Iraqi asylum seeker Iraq War Ireland irrationality islam Israel Italy iTunes IVF ivory ban jackson reforms Janowiec and Others v Russia ( Japan Jason Smith Jeet Singh Jefferies Jeremy Corbyn jeremy hunt job Jogee John Hemming John Terry joint enterprise joint tenancy Jon Guant Joseph v Spiller journalism judaism judges Judges and Juries judging Judicial activism judicial brevity judicial deference judicial review Judicial Review reform judiciary Julian Assange jurisdiction jury trial JUSTICE Justice and Security Act Justice and Security Bill Justice and Security Green Paper Justice Human Rights Awards JUSTICE Human Rights Awards 2010 justification just satisfaction Katyn Massacre Kay v Lambeth Kay v UK Ken Clarke Ken Pease Kerry McCarthy Kettling Kings College Klimas koran burning Labour Lady Hale lansley NHS reforms LASPO Law Commission Law Pod UK Law Society Law Society of Scotland leave to enter leave to remain legal aid legal aid cuts Legal Aid desert Legal Aid Reforms legal blogs Legal Certainty legal naughty step Legal Ombudsman legal representation legitimate expectation let as a dwelling Leveson Inquiry Levi Bellfield lewisham hospital closure lgbtq liability Libel libel reform Liberal Democrat Conference Liberty libraries closure library closures Libya licence conditions licence to shoot life insurance life sentence life support limestone pavements limitation lisbon treaty Lithuania Litigation litvinenko live exports local authorities locked in syndrome london borough of merton London Legal Walk London Probation Trust Lord Bingham Lord Bingham of Cornhill Lord Blair Lord Goldsmith lord irvine Lord Judge speech Lord Kerr Lord Lester Lord Neuberger Lord Phillips Lord Rodger Lord Sumption Lord Taylor LSC tender luftur rahman machine learning MAGA Magna Carta mail on sunday Majority Verdict Malcolm Kennedy malice Margaret Thatcher Margin of Appreciation margin of discretion Maria Gallastegui marriage material support maternity pay Matthew Woods Mattu v The University Hospitals of Coventry and Warwickshire NHS Trust [2011] EWHC 2068 (QB) Maya the Cat Mba v London Borough Of Merton McKenzie friend Media and Censorship Medical medical liability medical negligence medical qualifications medical records medicine mental capacity Mental Capacity Act Mental Capacity Act 2005 Mental Health mental health act mental health advocacy mental health awareness Mental Health Courts Mental illness merits review MGN v UK michael gove Midwives migrant crisis Milly Dowler Ministerial Code Ministry of Justice Ministry of Justice cuts misfeasance in public office modern slavery morality morocco mortuaries motherhood Motor Neurone disease Moulton Mousa MP expenses Mr Gul Mr Justice Eady MS (Palestinian Territories) (FC) (Appellant) v Secretary of State for the Home Department murder murder reform Musician's Union Muslim NADA v. SWITZERLAND - 10593/08 - HEJUD [2012] ECHR 1691 naked rambler Naomi Campbell nationality National Pro Bono Week national security Natural England nature conservation naturism Nazi negligence Neuberger neuroscience Newcastle university news News of the World new Supreme Court President NHS NHS Risk Register Nick Clegg Nicklinson Niqaab Noise Regulations 2005 Northern Ireland nuclear challenges nuisance nursing nursing home Obituary Occupy London offensive jokes Offensive Speech offensive t shirt oil spill olympics open justice oppress OPQ v BJM orchestra Osama Bin Laden Oxford University paramountcy principle parental rights parenthood parking spaces parliamentary expenses parliamentary expenses scandal Parliamentary sovereignty Parliament square parole board passive smoking pastor Terry Jones patents Pathway Students Patrick Quinn murder Pensions persecution personal data Personal Injury personality rights perversity Peter and Hazelmary Bull PF and EF v UK Phil Woolas phone hacking phone taps physical and mental disabilities physician assisted death Pinnock Piracy Plagiarism planning planning human rights planning system plebgate POCA podcast points Poland Police police investigations police liability police misconduct police powers police surveillance Policy Exchange report political judges Politics Politics/Public Order poor reporting Pope Pope's visit Pope Benedict portal possession proceedings power of attorney PoW letters to ministers pre-nup pre-nuptial Pre-trial detention predator control pregnancy press press briefing press freedom Prince Charles prince of wales princess caroline of monaco principle of subsidiarity prior restraint prison Prisoners prisoners rights prisoners voting prisoner vote prisoner votes prisoner voting prison numbers Prisons prison vote privacy privacy injunction privacy law through the front door Private life private nuisance private use proceeds of crime Professional Discipline Property proportionality prosecution Protection of Freedoms Act Protection of Freedoms Bill Protest protest camp protest rights Protocol 15 psychiatric hospitals Public/Private public access publication public authorities Public Bodies Bill public inquiries public interest public interest environmental litigation public interest immunity Public Order Public Sector Equality Duty putting the past behind quango quantum quarantine Queen's Speech queer in the 21st century R (on the application of) v Secretary of State for the Home Department & Ors [2011] EWCA Civ 895 R (on the application of) v The General Medical Council [2013] EWHC 2839 (Admin) R (on the application of EH) v Secretary of State for the Home Department [2012] EWHC 2569 (Admin) R (on the application of G) v The Governors of X School Rabone and another v Pennine Care NHS Foundation Trust [2012] UKSC 2 race relations Rachel Corrie Radmacher Raed Salah Mahajna Raed Saleh Ramsgate raptors rehabilitation Reith Lectures Religion resuscitation RightsInfo right to die right to family life right to life Right to Privacy right to swim riots Roma Romania Round Up Royals Russia saudi arabia Scotland secrecy secret justice Secret trials security services sexual offence Sikhism Smoking social media social workers South Africa south african constitution Spain special advocates spending cuts Standing starvation statelessness stem cells stop and search Strasbourg super injunctions Supreme Court Supreme Court of Canada surrogacy surveillance swine flu Syria Tax Taxi technology Terrorism terrorism act tort Torture travel treason treaty accession trial by jury TTIP Turkey Twitter UK Ukraine unfair consultation universal jurisdiction unlawful detention USA US Supreme Court vaccination vicarious liability Wales War Crimes Wars Welfare Western Sahara Whistleblowing Wikileaks wildlife wind farms WomenInLaw Worboys wrongful birth YearInReview Zimbabwe


This blog is maintained for information purposes only. It is not intended to be a source of legal advice and must not be relied upon as such. Blog posts reflect the views and opinions of their individual authors, not of chambers as a whole.

Our privacy policy can be found on our ‘subscribe’ page or by clicking here.

%d bloggers like this: