The completion of the human genome nucleotide sequence raises privacy concerns

Editor – Recently, many scientific journals (1–3) and the mass media have reported the completion of a rough draft of the human genome nucleotide sequence. This is an astonishing and monumental achievement that opens a new frontier in medicine. Sequence information from the public Human Genome Project and the private sector promises to revolutionize the treatment of many human diseases, including different forms of cancer, Alzheimer disease, asthma, and Parkinson disease, to name a few. However, accompanying the clinical benefits are potential problems related to privacy and discrimination. For example, dangers exist that insurance companies and employers may discriminate against individuals if they have access to their genetic data.

It is estimated that more than 4000 diseases, including Huntington disease, some types of leukaemia, cystic fibrosis and sickle-cell anaemia, are related to defective genes inherited from one or both parents. With improvements to the access of sequence data, how will it be possible to ensure that all individuals have equal rights to employment and health insurance? A 1989 survey of 400 firms conducted by North-western National Life Insurance in the United States found that 15% of employers surveyed planned, by the year 2000, to check the genetic status of prospective employees and their dependents before making employment offers (4). The problems do not stop there. It is also not clear how issues related to racial discrimination will be resolved.

Although potential difficulties are evident, I believe the completion of the Human Genome Project will result in dramatic benefits to human health. However, governments must be willing and able to put in place effective legislation to protect human rights and privacy.

 

Bao-Hong Zhang
Programme Leader
Key Laboratory of Cotton Genetic
Improvement of the Ministry of Agriculture
Cotton Research Institute
Chinese Academy of Agricultural Sciences
Anyang Henan 455112
People’s Republic of China
(email: zbh68@yahoo.com or biotec@public.zz.ha.cn)

 

1. Macilwain C. World leaders heap praise on human genome landmark. Nature, 2000, 405: 983–985.

2. Marshall E. Rival genome sequencers celebrate a milestone together. Science, 2000, 288: 2294–2295.

3. Dobson R. Working draft of the human genome completed. Bulletin of the World Health Organization, 2000, 78: 1168– 1169.

4. The Daily Texan, 30 June, 2000, 100: 4.

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