6 Storbritannia – The Human Genetics Advisory Commission

The HGAC was operational from December 1996 to December 1999. During that time it offered Government independent advice on issues arising from developments in human genetics, addressing the following priorities:

• Insurance and genetic testing – a report was published in December 1997

• Cloning – a report produced jointly with the Human Embryology and Fertilisation Authority was published in December 1998

• Employment and genetic testing – a report was published in July 1999.

To find out more about the Human Genetics Advisory Commission and its activities click on to:

The Commission for terms of reference, information about membership and contact details.

Events for HGAC meeting dates and information about other HGAC activities.

Press Notices for press notices issued by the HGAC.

HGAC Papers for HGAC reports and consultation documents.

The implications of genetic testing for employment

Foreword

The way in which genetic information is handled and the uses to which it is put are sensitive issues. So far, these issues have not arisen in the area of employment: earlier studies concluded that there was little evidence of systematic use of genetic testing programmes by employers in the UK.

Human genetics is a fast moving field, and employer and employee organisations alike are monitoring developments closely and assessing their implications. HGAC therefore decided that it would be timely to review genetic testing and employment and I have pleasure in presenting our report on this subject.

HGAC has consulted a wide range of organisations and individuals; we are indebted to them for providing information to us so willingly. The report sets out the policy principles we believe should be observed if and when genetic testing in employment becomes a real possibility. We have also recommended that the issues be fully reviewed in five years.

We hope that this report will stimulate wider informed consideration of the employment implications of genetic testing, so that when issues do arise they can be addressed in a balanced and constructive way.

The Baroness O' Neill

Summary of conclusions and recommendations

1. Our enquiries indicate that, with one exception, employers in the UK are not currently using genetic test results. (Paragraph 3.2)It will take major developments both in our understanding of common diseases and in genetic testing itself before genetic testing becomes a serious issue for employment practice. (Paragraph 3.5)

2. It has been suggested that, as the technology advances, employers may wish to use genetic tests to provide information to predict possible future poor health of their employees. We note in particular the possibility that unfair discrimination might arise if employers use genetic test results for employee selection and conclude that it would not be acceptable for genetic test results to be used to exclude people from employment or advancement on the grounds that they have a predisposition to future ill health. (Paragraph 3.12)

3. However, we note that there are situations where it might be appropriate for genetic test results to be used in employment. It is possible that specific genetic tests might be used to detect a condition that may put the employee or others at risk in the workplace. It is also possible that specific genetic tests might be used to assess whether an employee's genetic constitution affects their susceptibility to specific features of a working environment that do not normally present any hazard. Our conclusion therefore is that it would not be in anyone's best interests to ban the use of genetic test results for employment purposes completely. (Paragraphs 3.14 – 3.15)

4. We endorse the conclusions of the Nuffield Council on Bioethics (paragraph 3.13) and the Health and Safety Commission's Occupational Health Advisory Committee (paragraph 3.17).We note that those with a current disability of genetic origin are protected under the Disability Discrimination Act 1995 in the same way as those with other disabilities. ([Paragraph 2.13)

5. Although genetic testing is not currently systematically taking place for employment purposes, the scientific and technological barriers to its uptake are likely to be overcome in time. This time period therefore provides an opportunity for measured discourse and agreement (Paragraph 3.18).

6. HGAC concludes that if and when genetic testing in employment becomes a real possibility, a common set of policy principles, which would seek to provide appropriate protection to the public in a manner which is least burdensome to employers, should be observed (Paragraph 3.19):

(i) an individual should not be required to take a genetic test for employment purposes – an individual's "right not to know" their genetic constitution should be upheld;

(ii) an individual should not be required to disclose the results of a previous genetic test unless there is clear evidence that the information it provides is needed to assess either their current ability to perform a job safely or their susceptibility to harm from doing a certain job;

(iii) employers should offer a genetic test (where available) if it is known that a specific working environment or practice, while meeting health and safety requirements, might pose specific risks to individuals with particular genetic variations. For certain jobs where issues of public safety arise, an employer should be able to refuse to employ a person who refuses to take a relevant genetic test;

(iv) any genetic test used for employment purposes must be subject to assured levels of accuracy and reliability, reflecting best practice (in accordance with the principles established by the Advisory Committee on Genetic Testing in its publications). We recommend that any use of genetic testing should be evidence-based and consensual. Results of any test undertaken should always be communicated to the person tested and professional advice should be available. Information about and resulting from the taking of any test should be treated in accordance with Data Protection principles (see paragraphs 8 and 9 below). Furthermore, test results should be carefully interpreted, taking account of how they might be affected by working conditions; and

(v) if multiple genetic tests were to be performed simultaneously, then each test should meet the standards set out in (ii), (iii) and (iv).

7. We recommend that the Health and Safety Commission should be responsible for monitoring employers' use of genetic tests which detect sensitivity or resistance to workplace hazards; for recommending how and in what circumstances genetic testing might be applied at work as a risk control measure; and for advising how genetic testing data might be interpreted in a workplace setting. (Paragraph 3.20)

8. The handling of genetic test results, which are sensitive personal data, should meet the standards set by the Data Protection principles of fairness and lawfulness. (Paragraph 2.3) We note that the proposed Code of Practice being developed by the Data Protection Registrar will clarify the implications of the Data Protection Act (DPA) 1998 for both employer and employee representatives and highlight areas of good practice. (Paragraph 2.8)

9. We welcome the Government's proposal to specify the processing of "genetic data" as processing which is assessable under the new DPA and recommend that the Data Protection Registrar (to become the Data Protection Commissioner under the Act) also keeps under review the ways in which employers collect and handle any genetic test results. (Paragraph 2.9)

10. The limits of current knowledge about the predictive power of genetic information are not always well understood. We recommend that as part of the Health and Safety Commission's developing strategy for occupational health over the next 10 years, appropriate mechanisms are put in place to involve geneticists, employer and employee representatives and other stakeholders to monitor developments and discuss the implications for employment. (Paragraph 3.18)

11. The situation should be monitored and fully reviewed in 5 years time, in light of any further developments. (Paragraph 3.21)