Human genetics is increasingly becoming the focus for massive investment from Governments, research groups, biotech companies, aid organizations and medical charities worldwide. Among the international projects launched in this area, the Human Genome Project deserves special attention. This is a $3-billion global initiative to map and sequence every one of the estimated 100,000 genes that make up each individual. Its most important outcome will be the increased understanding of the way in which genes interact with each other and with the environment to generate normal (and pathological) structure and function.

Programmes, Prognosis, Partnerships

Today: It is possible to reduce the effect on mortality, disability and reproductive fitness in just under a third of single gene disorders. About 50 per cent of congenital abnormalities, 10 per cent of inherited diseases and 2 per cent of chromosomal disorders can be treated or corrected.

Within five years: Genetic approaches will become integral in many aspects of medical practice and it will be important for most health workers to have a basic understanding of medical genetics. There will be further developments in genetic counselling, based on a family-oriented approach, neonatal screening and individual testing. The number of common diseases, including cancer, diabetes, heart disease and auto-immune disorders being treated in clinical trials of gene therapy will increase.

Within 20 years: All human genes will have been mapped and identified. The genetic mechanisms of each disorder will have been described. Medicine will become more predictive and preventive, and diagnosis and therapy will become more specific and effective. Genetic diagnosis and counselling will be integrated into an increasing range of medical services. Genetic methodology will become a basic approach for health improvement and disease control. Gene therapy will be a universal method for disease prevention and treatment.

Partnerships: The work of WHO in the field of human genetics is supported by a wide network of international non-governmental organizations, collaborating centres and research programmes, including the Thalassaemia International Federation, the World Federation of Hemophilia, the International Cystic Fibrosis Association, the International Clearinghouse for Birth Defects Monitoring Systems, etc. In all, WHO cooperates with various partners in more than 80 developed and developing countries.

A Genetic Code... of Conduct

WHO's role is three-fold: it initiates international cooperation to develop genetic approaches to disease prevention and control in such areas as hereditary diseases, those with genetic predisposition and congenital malformations. Through international expertise and technical advice WHO also supports its member States in their efforts to plan and manage national genetic programmes. In doing so, WHO advocates and promotes the following governing principles:

• Medical application of genetic knowledge must be carried out with due regard to the general principles of medical ethics: doing good to individuals and families, offering autonomy of choice after information is given and facilitating personal and social justice.
• Genetic services should be available to all without regard to ability to pay and should be provided first to those whose needs are greatest.
• There should be no compulsory genetic testing of adult individuals or populations. People should be free to refuse or accept. All testing should be preceded by the provision of adequate information and counselling. Genetic counselling is essential before testing and should continue afterwards if necessary.
• Genetic data should only be used to the advantage of a family or ethnic groups, never to stigmatize or discriminate. It should be confidential and should not be given to a third party other than with the consent of the person tested.
• Education about genetics for the public and health care professionals is a priority. General practitioners will need to incorporate genetics into clinical practice if patients are to benefit from scientific advances. They will also require training to appropriately screen the relevance of media output to deliver proper counselling to patients.

POINT OF FACT: There are several strong candidates for the first-ever genetically engineered cervical cancer vaccine, according to scientists who participated in a WHO meeting on the current state of prophylactic vaccines against human papillomavirus (HPV) infection in February 1999. Cervical cancer is the second most important cancer in women after breast cancer. Approximately 500,000 new cases are identified each year. Mortality is very high - nearly 300,000 deaths annually, with 80 per cent of them in developing countries. HPV=s role in triggering off cervical cancer was discovered in 1983, building the basis for epidemiological and laboratory studies needed to understand the disease. Today, researchers in several countries are working on the prototype vaccine; some are trying to create a prophylactic vaccine, while others are developing a therapeutic vaccine for women who are already infected. A third group is trying to combine the two approaches. WHO will encourage trials to evaluate several different approaches.