Genetics Under the Microscope

UNESCO Pondering Ethical Guidelines

MONTREAL, DEC. 9, 2002 ( UNESCO is continuing to try to formulate guidelines in the fast-paced field of genetic research. From Nov. 26 to 28, its International Bioethics Committee held a meeting in this Canadian city, the ninth in a series.

The committee is working on documents to be presented next autumn to the UNESCO General Conference, according to a Nov. 25 UNESCO press release. In 1997 the United Nations Educational, Scientific and Cultural Organization formally adopted the Universal Declaration on the Human Genome and Human Rights, which laid down a series of ethical principles to guide scientists.

The bioethics committee is particularly concerned about the collection and use of genetic data. Genetic testing, both on the unborn and on adults, is increasing. There are an estimated 50 data banks with more than a million items each.

Regarding the collection of genetic information, the bioethics panel warns that there is a problem of consent, especially when genetic data are sought from people living in countries with less-developed legal protection systems.

Confidentiality with collected data is another major problem. The data need to be identifiable, but at the same time protected. A related difficulty is what to do when family members, who face similar genetic defects, want to know the results.

Other abuses loom. Genetic data can be used in a variety of ways to discriminate against a section of the population. People suspected of being more susceptible to certain illnesses might have a harder time finding a job or obtaining insurance.

The commercialization of genetic data is another minefield of problems. Dilemmas range from the patenting of genetic information, to how people should be rewarded for the information obtained from their data. Legal battles are under way over attempts to patent human genes.

Privacy under challenge

Legislatures in the United States are already taking action to avert threats over genetic data. Thirty-one states already have laws against genetic discrimination in the workplace, and 41 have laws against insurers using genetic information to discriminate, the Associated Press reported Sept. 13.

At the national level, privacy groups are pressing Congress to require people’s permission before genetic information is released. In testimony before a House Judiciary subcommittee last September, Dr. Deborah Peel of the American Psychoanalytic Association warned that losing control of genetic information could have serious implications for people. Peel asked if mortgage companies, for instance, should be allowed to access the results of an applicant’s genetic testing before deciding on a loan.

A warning also came from Francis Collins, a former University of Michigan professor who heads the government’s research effort into understanding human genes, the Detroit Free Press reported Oct. 3. “I think all of us should be profoundly concerned about the possibility that just as genetic medicine bursts forth with all of its power to prevent disease, people will find it’s not safe to get that genetic information because it may be used against us,” he said.

According to evidence presented at the September subcommittee hearings, 1% of major U.S. firms test new hires or current employees for sickle cell anemia, while 14% conduct medical exams that may include genetic tests to detect susceptibility to workplace hazards.

In England, meanwhile, Sir Alec Jeffreys, professor of genetics at Leicester University and the inventor of DNA fingerprinting, called for the creation of a national database to store DNA records of the entire population of the United Kingdom, the Financial Times reported Sept. 13.

Jeffreys wants the database to be managed by an independent body, not the police. He proposes that law enforcement officials be allowed to find out the names of people only after they have collected biological evidence from the scene of a crime, and after obtaining a court order permitting the release of a person’s identity.

His comments came as the Court of Appeal recently ruled that the police could keep DNA samples and fingerprints taken from people who faced prosecution but were never convicted. Lord Woolf, the lord chief justice, said the practice complied with the European Convention on Human Rights.

Lord Justice Sedley ruled that keeping the data taken from unconvicted people breached their right to respect for private life under the convention, but that it was justified by the legitimate aim of preventing crime.

Guidelines being prepared

At the global level, the early drafts of the documents being prepared by the International Bioethics Committee are posted on the UNESCO Web site. One of the texts, the International Instrument on Human Genetic Data, calls for special care to be taken with genetic data, because “this information may have a significant impact on the family and in some instances on the whole group to which the person concerned belongs.”

The document calls for human genetic data to be protected by legislation “so as to avoid any stigmatization of a person, family or group and any discrimination against them.” It also asks: “Prior, free, informed and express consent shall be required for the collection of human genetic data.”

The bioethics committee document asks that the data collected for scientific research be rendered anonymous. It also recommends that any financial benefits resulting from the use of genetic research be shared with the people who contributed the data used in the studies.

Another of the documents under preparation by the bioethics committee is one on pre-implantation genetic diagnosis (PGD) and germ-line intervention. PGD is increasingly being used to detect those fetuses with genetic problems, often resulting in their abortion. The UNESCO working group did not take a stand on the moral arguments relating to this question, although they did note that the Catholic Church is opposed to any harm being done to the fetus.

The document, however, does take a stand against the destruction of embryos for non-medical reasons. It also said that “the termination of pregnancies because of a specific gender are not ‘counterbalanced’ by avoiding later suffering by a severe disease.”

The document also observes that testing for genes that indicate a susceptibility to a certain disease does not give any certainty that the embryo will be clinically affected later on, but is “only an estimation of a risk.”

In relation to germ-line alterations — genetic changes that may be passed on future generations — the draft warns that extreme caution needs to be taken before going ahead with this type of genetic manipulation. Moreover, the bioethics committee “rejects the idea of testing and/or enhancing any human characteristic other than those of importance in alleviating suffering by disease.”

The document also argues that a danger associated with any genetic enhancement of normal human characteristics is that “it would profoundly affect our self-perception as ‘persons’ that is as autonomous beings. Instead we might consider ourselves as mere ‘things’ or biological artifacts designed by others.”

As well, the concept of justice between generations “demands respect for human conditions of life of future individuals who should be free to develop their potentialities without being biologically conditioned by the particular conceptions of ‘good’ and ‘bad’ human traits that were dominant at the time of those who preceded them.” Scientists and governments would do well to heed these warnings, before rushing ahead with further research.

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