The Advent of Genetic Medicine - Emerging Legal and Policy Concerns in Ireland

• Date: 01 January 2019

1

e Advent of Genetic Medicine – Emerging

Legal and Policy Concerns in Ireland

LUCY ROWAN*

Introduction

With the recent announcement of the arrival of genome sequencing in Ireland,1

one’s attention is drawn to the legal landscape within which these companies will

be operating. As genetic testing and precision medicine look set to become an

integral part of modern healthcare, doctors will have increasing access to predictive

health information about patients and their families. Described as ‘a looming

area of medico-legal controversy,’2 this inevitable reality presents an array of

complex ethical and legal challenges regarding access to and disclosure of genetic

information, given that it may have profound implications not only for patients,

but for their blood relatives too. ese issues transcend the realm of theoretical

debate to practical reality in situations where a patient undergoes genetic testing

and becomes privy to knowledge which may aect direct relatives, but refuses to

consent to doctor disclosure.

Being privy to our genetic blueprints can oer unparalleled opportunities to

take preventative measures in an attempt to eliminate or mitigate the eect of

potential genetic disease. Considering that, this article addresses the nuanced and

multifaceted question of whether traditional doctors’ duties should be expanded

to encompass a positive obligation to disclose shared genetic risk to aected family

members. It will set out the Irish legal position and argue that imposing a duty to

disclose genetic risks which may prevent serious harm from occurring is the most

pragmatic way of legally protecting and vindicating familial interests in shared

genetic information.

is article is divided into ve parts. Part I will explain the science underpinning the

study of genetics and set out why individuals have a legitimate interest in knowing

their genetic make-up. Part II will outline the foundation and scope of the doctrine

of condentiality in Ireland. Part III will analyse emerging trends surrounding a

duty to disclose in both the United States and in the United Kingdom.3 Part IV will

examine relevant case law in an eort to clarify the Irish position regarding third

* B.C.L. (DCU), LL.M. (DCU), Judicial Assistant at the High Court of Ireland.

1 Dominic Coyle, ‘Genomics Research : Chinese group to lead $400m investment’ e Irish Times

(Dublin, 27 November 2018).

2 Dean Bell and Belinda Bennett, ‘Genetic Secrets and the Family’ (2001) 9 Medical Law Review 9.

3 roughout this article, ‘United Kingdom’ or ‘UK’ will be used to refer, in short, to the Courts of

England and Wales.

2  

party genetic disclosure. Finally, Part V will provide a suggested way forward for

Ireland which will ensure that policy concerns are addressed while familial interests

in genetic information are equally protected and vindicated in this jurisdiction.

Part I – Genetic Blueprints: e Science and the Right to Know

A widespread understanding of the role of genetic factors in the causation of human

disease has led to hugely signicant contributions to the area of disease avoidance

and prevention.4 As a result, the study of genetics has been described as ‘the aspect

of medicine that must become the focus of modern medicine’.5 e rapid pace

of progress in understanding the human genome has introduced unprecedented

opportunities for early intervention in disease development. is has also provoked

a range of challenges for clinical practice and the legal eld.

Genetics refers to the study of hereditarianism and examines how genes determine

what traits are passed on from parents to their ospring.6 Genes are responsible not

only for determining a person’s physical features (hair and eye colour, etc) but also

for providing tangible evidence and markers of a person’s susceptibility to certain

types of diseases, including heart disease and dierent types of cancers. In some

cases, the manifestation of a disease in a person can be explained by ‘a single gene,

or monogenic, defect’.7 However, the majority of genetic diseases are multifactorial

meaning that their development depends largely on the interaction between

genes and environmental factors.8 For that reason, identication of genetic factors

predisposing individuals to disease and identication of genetically predisposed

individuals are powerful keys for discovering the ‘critical environmental agents of

disease’.9 Once the genetic factors in disease susceptibility have been identied,

individuals may seek medical advice and potentially avail of early intervention

methods for the treatment and/or prevention of disease.

Genetic predispositions to certain diseases are most commonly detected by a genetic

test. Genetic testing describes ‘the analysis of a specic gene, its product or function,

or other DNA and chromosome analysis, to detect or exclude an alteration likely to

be associated with a genetic disorder’.10 In essence, it is the practice of examining

an individual’s DNA to ascertain whether he or she is predisposed to developing

4 omas D. Gelehrter, Francis S. Collins and David Ginsburg, Principles of Medical Genetics (2nd

edn, Williams and Wilkins 1998) 1.

5 ibid 1.

6 Aisling de Paor, Genetics, Disability and the Law: Towards an EU Legal Framework (Cambridge

University Press 2017) 13.

7 ibid 18. Examples of single g ene disorders include Huntington’s disease, cystic brosis, sickle-cell

anaemia, muscular dystrophy and haemophilia (colour-blindness).

8 ibid.

9 Gelehrter (n 4) 2.

10 Peter S. Harper, ‘What Do We Mean By Genetic Testing?’ (1997) 34 Journal of Medical Genetics

749, 749.