Search Results for: genetic


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)
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Can we keep our genomes quiet? Some suggestions from the US

18 October 2012 by

DNA database impact on human rights

I have posted previously on the logistical difficulties in legislating against genetic discrimination.

The prospect that genetic information not only affects insurance and employment opportunities is alarming enough. But it has many other implications: it could be used to deny financial backing or loan approval, educational opportunities, sports eligibility, military accession, or adoption eligibility.  At the moment,  the number of documented cases of discrimination on the basis of genetic test results is small. This is probably due to the relatively few conditions for which there are currently definitive genetic tests, coupled with the expense and difficulty of conducting these tests. But genetic discrimination is a time bomb waiting to be triggered and the implications of whole genome sequencing (WGS) are considered in a very interesting and readable report by the US Presidential Commission for the Study of Bioethical Issues  Privacy and Progress in Whole Genome Sequencing. 

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Will genetically-informed medicine upend medical confidentiality?

17 May 2017 by

ABC v St George’s Healthcare NHS Trust and Others [2017] EWCA Civ 336 – read judgment

All the advocates in this case are from 1 Crown Office Row. Elizabeth-Anne Gumbel QC, Henry Witcomb QC and Jim Duffy for the Appellant, and Philip Havers QC and Hannah Noyce for the Respondents. None of them were involved in the writing of this post.

In a fascinating twist to the drama of futuristic diagnosis, the Court of Appeal has allowed an argument that doctors treating a Huntington’s patient should have imparted information about his diagnosis to his pregnant daughter to go to trial.

The background to this case is outlined in my earlier post on Nicol J’s ruling in the court below. A patient with an inherited fatal disease asked his doctors not to disclose information to his daughter. The daughter came upon this information accidentally, shortly after the birth of her child, and found, after a genetic test, that she suffered from this condition as well, which has a 50% chance of appearing in the next generation. Had she known this, she would have sought a termination of the pregnancy. She claimed that the doctors were liable to her in damages for the direct effect on her health and welfare.

A claim for “wrongful birth” is well established in law; no claim was made on behalf of the child, who was too young to be tested for the condition. The twist is the duty of secrecy between doctor and patient, which has held very well for the past two centuries. Short of confessions pertaining to homicide or information regarding contagious diseases, the dialogue behind the consulting door should end there.

The problem is that the typical medical relationship only pertains to the pathology of the individual patient. Now that tests are available that make every single one of us a walking diagnosis not only for our own offspring but those of our siblings and their offspring, the one-to-one scenario collapses, along with the limited class of people to whom a doctor owes a duty of care. The pregnant daughter who came across the information about her father’s condition was not the defendant doctor’s patient. In pre-genetic days, that meant there was no duty of care relationship between her father’s doctors and her. But the certainty of hereditability brings her into that circle.
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When the Sh*t hits the Ban

30 June 2015 by

Genetic Information Nondiscrimination ActJack Lowe and Dennis Reynolds, Plaintiffs v Atlas Logistics Group Retail Services

The first prosecution under the 2008 US Genetic  Information Nondiscrimination Act (GINA) has won $2.25 million jury damages for the individuals involved .

I have posted about genetic discrimination here and here. In the US some of these problems have been foreseen and legislated against: GINA prohibits discrimination against healthy individuals for employment decisions or health insurance purposes on the basis of genetic information alone; it also prevents employers and insurance providers from demanding or using information from genetic tests.

The law does include limited exemptions, however. Forensic laboratories can ask workers for their DNA to check that employees’ genetic material does not contaminate the genetic samples that they analyse.
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Doctor/patient confidentiality in genetic disease case

29 February 2020 by

ABC v St George’s Healthcare Trust and others [2020] EWHC 455 (QB)

The High Court has ruled that the health authorities owed a duty of care to the daughter of their patient who suffered from the hereditary neurodegenerative order Huntington’s Chorea, to inform her about his condition. But in the circumstances, Yip J concluded that the duty was not breached and that causation had not been established.

The facts of this case are set out in our previous post about the interlocutory proceedings before Nicol J. It will be recalled that the father had killed the claimant’s mother and was detained in a psychiatric hospital at the time of these events.

The outcome of the hearing on the merits has been awaited with anticipation because the finding of an obligation on a doctor to inform a third party may undermine the doctor-patient confidentiality rule, and this in turn would have a significant impact on the health services, particularly as genetic medicine increases the number of diagnoses that affect not just the individual patients but their relatives as well.

The issues before the Court

Now that the full trial of the merits of this case has been held, we have a more nuanced picture of the legal duties and defences. For a start, there were a number of defendants, not just the father’s clinician, but the medical team that made up the family therapy group that treated both claimant and her father. Furthermore evidence has come to light about the claimant’s attitude to the dilemma that she faced which has had implications for the decision on causation.

But first, let’s look at the issues that Yip J had to determine in this important case involving the implications for medical confidentiality in the context of hereditary disease.

i) Did the defendants (or any of them) owe a relevant duty of care to the claimant?

ii) If so, what was the nature and scope of that duty?

iii) Did any duty that existed, require that the claimant be given sufficient information for her to be aware of the genetic risk at a stage that would have allowed for her to undergo genetic testing and termination of her pregnancy?

iv) If a duty of care was owed, did the defendants (or any of them) breach that duty by failing to give her information about the risk that she might have a genetic condition while it was open to her to opt to terminate her pregnancy?

v) If there was a breach of duty, did it cause the continuation of the claimant’s pregnancy when it would otherwise have been terminated? (This involves consideration of whether the claimant would in fact have had the opportunity to undergo genetic testing and a termination in time but for the breach, and whether she would have chosen to do so.)


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No duty of care to disclose to pregnant daughter father’s genetic disease – High Court

20 May 2015 by

12280487228o6zg0ABC v St George’s Healthcare NHS Trust and others [2015] EWHC 139, Nicol J – read judgment

Philip Havers QC  and Hannah Noyce, and Elizabeth-Anne Gumbel Q.C. and Henry Witcomb  of Crown Office Row represented the defendants and claimant respectively in this case. None of them have had anything to do with the writing of this post.

I have blogged before on the Pandora’s box of ethical problems and dilemmas emerging out of our increasing understanding of genetic disorders (see here, here and here), and here is a case that encompasses some of the most difficult of them.
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Genetic testing of children up for adoption

27 April 2013 by

12280487228O6zG0Y and Z (Children), 25 April 2013 [2013] EWHC 953 (Fam) – read judgment

Having children is a lottery. No judge or court in the land would sanction the regulation of childbearing, however feckless  the parents, unsuitable the conditions for childrearing, or unpromising the genetic inheritance.

Adoption on the other hand is stringently regulated, set about with obstacles for prospective parents, and strictly scrutinised by an army of authorities backed up by specialist family courts and a battery of laws, statutory instruments and guidance papers. Usually the filtering is in one direction only: the suitability of the parents to the child or children up for adoption. But sometimes it goes the other way, and this case raises the fascinating and somewhat futuristic question of whether children’s chance of finding a suitable home might be increased by genetic testing.

The circumstances were somewhat exceptional here, since the local authority had ascertained from the biological father  of the two young boys in question that they might have a chance of inheriting a rare genetic disorder of the central nervous system. Huntington’s Chorea is caused by a single gene mutation on chromosome IV and causes damage of the nerve cells and areas of the brain which in due course leads to severe physical, mental and emotional deterioration. Anyone whose parent has the disease is born with a fifty per cent chance of inheriting the gene. Anyone who inherits the gene will, at some stage, develop the disease. 
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Irish Supreme Court struggles with outcome of surrogacy arrangements

20 November 2014 by

orig-src_-susanne-posel_-daily_-news-dna_baby_womb

M.R. and D.R.(suing by their father and next friend O.R.) & ors -v- An t-Ard-Chláraitheoir & ors [2014] IESC 60 (7 November 2014) – read judgment

The definition of a mother, whether she is “genetic” or “gestational” for the purpose of registration laws was a matter for parliament, not the courts, the Irish Supreme Court has ruled.

At the core of the case was the question whether a mother whose donated ova had resulted in twin children born by a surrogacy arrangement should be registered as their parent, as opposed to the gestational mother who had borne the twins.

The genetic mother and father sought her registration as “mother” under the Civil Registration Act, 2004, along with a declaration that she was entitled to have the particulars of her maternity entered on the Certificate of Birth, and that the twins were entitled to have their relationship to the fourth named respondent recorded on their Certificates of Birth.
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IVF Doctor not liable for failing to warn parents of genetic disorder in child – Australian Supreme Court

21 May 2013 by

12280487228o6zg0Waller v James  [2013] NSWSC 497 (6 May 2013) – read judgment

So-called “wrongful birth” cases – where parents claim for the costs of bringing up a child that has been born as a result of the hospital’s alleged negligence – have long been the subject of heated debate.

Since 1999 (MacFarlane v Tayside Health Board) such damages have been refused on grounds of public policy – for the birth of a healthy baby, that is. As far as disabled children are concerned, parents can the additional costs attributable to the disability (Parkinson v St James and Seacroft NHS Trust).  Now that so much more can be predicted with a high level of certainty from pre-birth, even pre-conception genetic tests, where do we stand on public policy in wrongful birth cases where the negligence not so much in failure to treat (failed vasectomies etc) but failure to inform? This Australian case gives some indication of the way the courts may approach such questions.

Background facts

Keeden Waller was conceived by IVF using the Wallers’ own gametes. There was a fifty percent chance that he would inherit from his father a blood disorder called antithrombin deficiency (ATD), a condition that affects the body’s normal blood clotting ability and leads to an increased risk of thrombosis. Keeden suffered a stroke a few days after his birth resulting in severe disabilities, which his parents, Lawrence and Deborah Waller, alleged was the result of ATD. They brought a claim in damages against their doctor for the care of their disabled son and psychological harm to themselves.
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The Human Genome and Human Rights recommendations: “aspirational and symbolic”

2 December 2015 by

DNA database impact on human rightsThe International Bioethics Committee, under the auspices of UNESCO, has recently updated its guidance on the human genome and human rights. The Report of the IBC on Updating its Reflection on the Human Genome and Human Rights was published in October 2015, and takes into account the  Universal Declaration on the Human Genome and Human Rights (1997), the International Declaration on Human Genetic Data (2003) and the Universal Declaration on Bioethics and Human Rights (2005). The following summary is based on Alison Hall’s review of the recommendations in the PHG Foundation’s bulletin.

The IBC’s report attempts to review all the relevant ethical challenges for regulating genetic research and clinical care across national boundaries. The area that has received most coverage in the press involves the emerging techniques for editing the human genome, in particular engineering gametes. The other four areas of application the IBC has chosen for review are:

Direct-to-consumer genetic tests and genetic analysis that is not related to health care
Precision/personalised medicine
Biobanks (banks of genetic information)
Non-invasive prenatal testing
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From base pairs to the bedside: medical confidentiality in a changing world

12 December 2012 by

DNA database impact on human rightsThis week David Cameron announced plans  to introduce whole genome mapping for cancer patients and those with rare diseases within the NHS. 

Single gene testing is already available across the NHS ranging from diagnosing cancers to assessing patients’ risk of suffering side effects from treatment, but this initiative will mean that the UK will be the first country in the world to introduce the technology within a mainstream health system, with up to 100,000 patients over three to five years having their whole genome – their personal DNA code –sequenced. According to Chief Medical Officer Professor Dame Sally Davies

The genome profile will give doctors a new, advanced understanding of a patient’s genetic make-up, condition and treatment needs, ensuring they have access to the right drugs and personalised care far quicker than ever before.

What will this mean for medical confidentiality?  The official announcement ends with the following declaration:

1. Genome sequencing is entirely voluntary. Patients will be able to opt out of having their genome sequenced without affecting their NHS care.

2.  Whole genome sequence data will be completely anonymised apart from when it is used for an individuals own care.

3. A number of ways to store this data will be investigated. The privacy and confidentiality of NHS patients will be paramount in this decision.
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Down the Rabbit Hole of Genetic Testing

19 April 2016 by

Can our genotype tell us about our behaviour as well as our biology?

Photo credit: Guardian

“ After this there is no turning back. You take the blue pill: the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill: you stay in Wonderland and I show you how deep the rabbit hole goes.”

– Morpheus, The Matrix

The explosion of genetic testing in the last half century has produced unquantifiable benefits, allowing scientists to understand the constitution of genetic disorders and dramatically improve disease diagnosis, avoidance and treatment. Consider the near-eradication of Tay-Sachs, a fatal neurodegenerative disease, since the introduction of screening in the 1970s; the standardisation of newborn testing; and the introduction of BRCA1 and BRCA2 testing for inherited cancer genes.

These advances have created challenging ethical and legal questions, however: How much information does each of us want to know about our genetic makeup?; Do we have a responsibility to seek such information out? What should we do with the information once we get it? What about the significant risks of stigmatisation and discrimination?; And, where do doctors’ duties begin and end insofar as they are, or ought to be aware of testing outcomes?

In the High Court last week (judgment available here) McKenna J dealt with the latter question, striking out a claim by a patient’s relatives over a missed diagnosis of a genetic disorder and holding that a third party cannot recover damages for a personal injury suffered because of an omission in the treatment of another.
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The Patentability of Human Genes: more developments

20 March 2013 by

Breast Cancer in DNA StrandsCancer Voices Australia v Myriad Inc 13 February 2013 – read judgment

Another battle in the war against gene patenting has been lost, this time in Australia.

The US litigation is still ongoing, with the US Court of Appeals for the Federal Circuit upholding Myriad’s patents on DNA sequenced in the laboratory: see my post on that judgment. On 30 November 2012, the US Supreme Court announced that it would hear an appeal in the Myriad case. The US law in relation to the patentability is therefore not likely to be settled until the Supreme Court reaches it own decision on the issue.

This Federal Court ruling in Australia has now endorsed the government’s rejection of calls for an outright ban on the patenting of genes  by ruling that  isolated nucleic acid (including isolated DNA and RNA) is patentable.  
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Ban on fertility treatment does not breach Convention, says Strasbourg

10 November 2011 by

S.H. and Others v. Austria (Application no. 57813/00), 3 November 2011 – read judgment

The Grand Chamber of the Strasbourg Court has rejected complaints from two infertile couples that the Austrian prohibition on using medically-assisted procreation techniques did not breach their right to respect for family life under Article 8 or the right to found a family under Article 12.  The choices the legislature had made reflected the then current state of medical science and the consensus in society and it had therefore not overstepped its (wide) margin of appreciation in this area.

This refusal to allow infertile couples the protection of the Convention against restrictive state legislation comes as some surprise in the light of Strasbourg’s readiness to insist that governments should allow prisoners access to artificial insemination (AI): Dickson v United Kingdom (2006).  Why should infertile couples be denied the anxious scrutiny accorded to those behind bars? This giving with one hand and taking with another simply confirms the cynic’s view of the court as being deeply partisan in its approach. And it is far from clear why governments should be allowed such leeway in an area so central to the ECHR’s concerns: the Court itself has said that where a particularly important facet of an individual’s existence or identity is at stake, the margin allowed to the State would normally be severely restricted. The matter of procreation and the genetic relatedness of one’s offspring must surely belong to this “core” area of life.
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Three Person IVF to begin in UK

20 March 2017 by


A clinic in Newcastle upon Tyne has been granted the UK’s first licence to carry out a trial of “three person IVF” (Mitochondrial Replacement Therapy, or MRT). The fertility technique is intended to be used by couples who want to prevent genetic diseases being passed on to their children, due to faulty mitochondrial DNA. The process uses genetic material from the mother, father and a female donor, and replaces faulty genetic material in the mother’s DNA with the female donor’s genetic material.

There have already been a small number of three parent IVF pregnancies elsewhere in the world, resulting in reportedly healthy babies.

However the technique is not without its controversies and critics.
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