Having had heavy caring duties for two relatives all of my life, and having been employed within the health service, I became conscious of how developments within genomics could raise issues of serious ethical and legal concern.
I was fortunate that the University of Strathclyde offers a means of gaining a degree in law by attending night classes. I deliberately chose to study for a full LLB, as this would allow me to cover areas wider than those included in the highly regarded MPhil in Medical Law that was offered at the University of Glasgow at the time. I have never regretted this choice.
While studying law, I was a member of the Human Genetics Commission's Consultative Panel, composed of people with a direct understanding of the impact of genetic conditions on the family. This membership helped me to gain insight into scientific developments, and made me conscious that papers were being published whose authors lacked a fundamental knowledge of the science of genetics.
This is why, when I originally decided to write my book Medical Genetics and Law – a second edition of which has recently been published – I was insistent that the book should begin with the science. The account of genetics provided in the early chapters is somewhat basic, but hopefully it gives readers a fundamental understanding of genetic inheritance and how things go wrong, with an often inevitable impact on people's lives.
I included a chapter on preimplantation testing (PGT) due to my experience as a member of the Human Fertilisation and Embryology Authority (HFEA), and in particular as a member of that regulator's Licensing Committee. The chapter gives examples of the modes of genetic inheritance and their consequences, leading to instances where parents or clinics request that PGT for a particular condition should be permitted. This chapter also indicates the demands made on a lay member of the Licensing Committee to understand the complexity. The first few chapters of my book might have been (and perhaps now will be) helpful.
The second edition of the book broadens the discussion to PGT worldwide, with a chapter that allowed me to learn more about ethical and legal approaches to genetic disorders, and how different societies view disability and abortion. For instance, I was initially unaware that Saudi Arabia allows termination for trisomy 13 (Patau's syndrome) and trisomy 18 (Edwards' syndrome), but not for trisomy 21 (Down's syndrome) as it is compatible with life.
As far as law is concerned, we already have well-established cases claiming 'wrongful birth', due to the consequences of children being born with a genetic condition that was not detected during medical care prior to or during pregnancy. The second edition of my book has a chapter devoted to this issue, and to the contentious issue of claims for 'wrongful life' (see BioNews 631).
I have served on advisory body for the Scottish Biobank, Generation Scotland (see BioNews 344), and I am interested in the expansion of population biobanks alongside the seeking of treatments for multifactorial conditions. I have devoted a chapter to related issues including the privacy of patient data, informed consent and property rights, and I note that concerns regarding the use of private patient medical data held within the NHS for research are currently in the news.
My book inevitably discusses advances such as genome editing and mitochondrial replacement therapy. There is also a chapter that focuses primarily on ethical issues – the impact of developments on different aspects of people's lives, definitions of 'serious' and 'significant' in relation to genetic disorders, and the question of whether an individual's ownership of their genetic information is shared with that individual's genetic relatives.
There is a chapter examining issues that cross the barrier from ethics to law, as well as issues specific to law. One case in particular reveals the need for lawyers to be educated in science – the civil case of Toombes v Mitchell. Here, as my book explains, both the defence and the judge failed to understand the inheritance of the relevant condition.
I also include the story of a mother, Kathleen Folbigg, who was falsely jailed for the murder of her four children. Extensive genetic analysis revealed that her children had two separate genetic mutations that could explain their deaths. It was with great joy that I reported that she had been freed, after spending 20 years in jail (see BioNews 1292).
When I first started to explore issues concerning the combination of genetics and law, I had great difficulty getting articles published. Journals would reject my papers either due to the inclusion of science or due to the inclusion of law, leaving me to focus on writing my book. I am grateful to BioNews for publishing the occasional commentary (see BioNews 961, 873 and 705), so that at least I felt that I was being heard. I am also grateful to BioNews for its generous review of the first edition of my book (see BioNews 1177). The areas included in the book will expand with the corresponding concerns.
The book took many years to write, against life's demands. I am very grateful for the patient support of my family, and particularly my son Tom, who became the illustrations editor and drew many of the illustrations included.
Buy the book Medical Genetics and Law: An International Perspective, by Dr Mair Crouch, from Amazon UK.
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