The Ethics and Governance of Human Genetic Databases European Perspectives Part 5 potx

13 Third parties’ interests in population

genetic databases: some comparative

notes regarding the law in Estonia,

Iceland, Sweden and the UK

Lotta Wendel

Introduction

Population genetic databases typically share a common rationale, namely

to be used for medical research regarding genetically related diseases

and for the health and medical care of the population concerned.

Nevertheless, the material and information gathered in population

genetic databases attracts interest from individuals and institutions far

beyond the medical and scientific community. In this chapter the law

in Estonia, Iceland, the UK and Sweden is discussed in relation to such

third-party interests in population genetic databases.1

Broadly speaking, interests from third parties can be divided into three

types, with different agendas and varying relations to the donor. The

regulative response to each interest mirrors the normative choices in

casu, but also the more general characteristics of the legal tradition in

each jurisdiction.2

The first type of interest in the genetic database relates indirectly, though

nevertheless immediately, to concerned individuals, namely the genetic

relatives. Their interest is based on the fact that genetic relatives share

genetically significant characteristics. Information regarding hereditary

diseases in the genetic database is accordingly relevant also for persons

other than the individual donor. The closer the kinship, the higher the

relevance of the information. Regulation regarding feedback to genetic

1 For editorial reasons it has not been possible to take legal changes after 30 June 2004

into account.

2 The general characteristics of the legal models in these four jurisdictions are highlighted

by Susan M. C. Gibbons, ‘Governance of population genetic databases: a comparative

analysis of legal regulation in Estonia, Iceland, Sweden and the UK’, chapter 15 in this

volume.

108

relatives is discussed elsewhere in this book.3 But when acknowledging the

familial nature of genetic information, it could also be argued that genetic

relatives should be legally recognized as independent bearers of individual

legal rights in relation to the genetic database. As will be shown below, a

legal right of this kind has so far been introduced only in Iceland.

The second type of interest is based on the argument that general

societal concerns outweigh concerns regarding the privacy of the indivi￾dual donor. When genetic databases, gathered for research and medical

purposes, are used for forensic purposes, the legal basis is founded on

arguments of this kind. DNA analysis is increasingly used as a tool to

identify, confirm or eliminate suspects in criminal investigations, and

to identify victims or establish links between different crimes. This has

led to the establishment of national DNA databases for use in criminal

investigations in most European countries.4

Still, clinical genetic databases

remain of interest for forensic purposes as criminal genetic databases only

include information about persons who have had previous contact with the

police. But if the criminal investigative authorities can gain access to

clinical genetic databases, these collections inadvertently become exten￾sions of the national DNA databases that exist for the prevention of

crime. This has implications for the privacy of the donor as well as for

future research. In the UK and Sweden these questions have attracted

considerable attention.

Finally, the third type of interest dealt with here is signified by financial

considerations. Employers’ and insurers’ inclination to make cost–benefit

and actuarial calculations provides a rational foundation for asking for

genetic information in order to deny or revoke employment and insur￾ance, or to set much higher insurance premiums, for perceived high-risk

individuals. The fear of misuse of genetic information in this respect has

made the four compared jurisdictions react in different manners, but only

Estonia has, so far, issued explicit prohibitions banning employers and

insurers from collecting or requiring job applicants, employees and appli￾cants for insurance or insured persons to provide tissue samples or

descriptions of DNA.

Whether third parties’ interests may lead to access or other rights to the

genetic database or not, depends, of course, on the contents of the

3

See Ants No˜mper, ‘Transforming principles of biolaw into national legislation: compar￾ison of four national laws in three aspects’, chapter 14 in this volume.

4 For an overview, see e.g. Margareta Guille`n, Maria Victoria Lareu, Carmela Pestoni,

Antonio Salas and Angel Carracedo, ‘Ethical-Legal Problems of DNA Databases in

Criminal Investigations’, Journal of Medical Ethics 26 (2000), pp. 266–271.

Third parties’ interests in population genetic databases 109

consent given when the donor originally agreed to participate.5 This

chapter will, however, concentrate on situations where consent is with￾held or cannot be obtained. In the context of employment and insurance,

at least, the value of individual free consent to third-party access must

also be comprehended as merely illusory. The lop-sided power relation

between the employee, insured or applicant for a job or insurance on the

one hand, and the employer or insurer on the other, makes it hard for the

individual to withhold consent without negative repercussions. This view

has made the WHO Human Genetics Programme propose that insurance

companies, schools, employers, government agencies and any other insti￾tutional third parties that may be able to coerce consent should not be

allowed access even with the donor’s consent. Access without the donor’s

consent should only be allowed for forensic purposes or where informa￾tion is directly relevant to public safety.6 However, more recent inter￾national documents have failed to acknowledge the potential for undue

influence. For example, article 14(b) of the International Declaration on

Human Genetic Data states that human genetic data and biosamples

linked to an identifiable person should not be disclosed or made acces￾sible to third parties – in particular, employers, insurance companies,

educational institutions and the family – except where the donor

consents, or for an important public interest reason in cases restrictively

provided for by domestic law.7

The familial nature of genetic information

The most dominant principle that underpins the legal frameworks in each

of the four countries is that of individual rights. The liberal legal tradition

is particularly conspicuous in the UK and under Swedish legislation, as all

regulation in these countries targets individuals, and the only rights that

may be attributed to family members are directly derived from the origi￾nal individual donors, as for example when parents consent to the parti￾cipation of their child in a genetic database. There have been no measures

introduced in either country to recognize that genetic information

5 The legal construction of consent in the four jurisdictions is dealt with in another chapter

in this book. See Ho¨rdur Helgi Helgason, ‘Consent and population genetic databases: a

comparative analysis of the law in Iceland, Sweden, Estonia and the UK’, chapter 12 in

this volume.

6 WHO Human Genetics Programme ‘Proposed International Guidelines on Ethical Issues

in Medical Genetics and Genetic Services’ (WHO, 1998), table 10 (proposed ethical

guidelines for access to banked DNA).

7 UNESCO, International Declaration on Human Genetic Data, adopted by the General

Conference of UNESCO at its 32nd Session on 16 October 2003.

110 Lotta Wendel