Although the mapping of the human genome has opened major opportunities for medical advancement, it also gives rise to potential genetic discrimination.With the ever increasing use of genetic testing and the related publicity, the issues surrounding the use of information that can predict future health status are likely to become more prevalent and contentious. The scale of this issue is far reaching, with genetic markers found for high incidence disorders such as cancer, heart disease, liver disease, kidney disease, many of the dementias (such as Alzheimer’s disease) and other conditions.
We recently examined the experiences of Australian individuals who have a family history or who have undergone genetic testing for Huntington’s disease (HD), an inherited neurodegenerative disease for which there is a definitive genetic test.The aim of the study was to evaluate the related social, ethical, and legal issues. Sixty participants completed a survey regarding their experience of genetic discrimination, adverse and unfair treatment, and knowledge about existing laws and policies surrounding genetic discrimination. Analyses revealed significant experiences of genetic discrimination and there was also a concerning lack of knowledge of legal rights and avenues.
This research inspired us to produce a booklet and website in an attempt to outline the common areas of perceived discrimination. Some of the case studies are examples of the experiences of the people in the study. Many of the issues raised were settled by negotiation, even when a legal remedy may have been available. However, a settlement may depend on the good will of the parties and in some cases the law may not be able to achieve the same result. The best protection is to be aware of your rights which are set out in this booklet in the discussion of various types of discrimination you may encounter, and also in the legal section.
The purpose of this website and booklet (downloadable here) is to demystify and make accessible the relevant legislation and avenues for recourse. It is written for people affected by genetic disorders, family members, caregivers and those professionals who give advice to these communities (general practitioners, psychologists, social workers, psychiatrists).It is hoped that these resources will inform and educate consumers of legal services in order to improve knowledge of the law relating to genetic discrimination, to enhance transparent and open communication with the legal profession, and to provide a framework to understand often complex legislation.It is in general terms and it is not designed to replace legal advice. You should always seek advice from appropriate professionals if you feel you have been discriminated against.
We would like to acknowledge the participation of the Australian Huntington’s Disease community on this project.
We are grateful for the comments of Professor Nicola Lautenschlager, Professor David Ames, and Dr Andrew Churchyard on the document.
We are also grateful for the legal expertise of Professor Loane Skene in the development of this project, and her comments on the legal comments of this booklet.
We also acknowledge the kind assistance of the Investment and Financial Services Association Limited Association (IFSA) for their comments on the insurance information.
A note to the reader The case studies contained in this website are taken from several sources, including from our research, focus groups with patients and health professionals, from the available literature, and also adapted from actual real-life cases.In each case names and identifying features have been changed in order to protect privacy.
This information is intended as a general guide only and you should obtain legal advice if you have specific questions.