Banking on genes

Various high-profile genetic projects around the world are pushing the barriers of research. But are they trespassing on human rights?

By | December 4, 2000

LONDON Alongside the development of genetic research comes the study of gene ethics. Undoubtedly, the mapping out of the human genome has opened corridors full of doors for scientists researching disease preventions and cures. But public concern has been raised over who has access to gene databases and what could be done with information about an individual if it falls into the wrong hands.

Using someone's genes for research purposes without their consent is considered a breach of our human rights. In the UK, news that a doctor has taken genetic material without the patient's consent incites public outrage but laws in other countries are less rigid. Hence the considerable increase over the past five years of Western research projects in developing countries.

This year, researchers from three Harvard-affiliated institutions were under investigation by the US federal government following a complaint from a former colleague about their research practices. The researchers were in China studying potential genetic links to conditions ranging from obesity to schizophrenia.

Gwendolyn Zahler, formerly an assistant professor at Harvard's public health school, filed the complaint stating: "Cheaper, larger and faster genetics studies are possible in China only because the country has not yet established the legal, environmental and medical protections afforded to American citizens." But the Harvard-affiliated institutions insisted they used the same rules to protect participants as they would have used in the US.

Ruth Raden, executive director at John Hopkins University's bioethics institute commented: "We're all tied up in knots about the ethics of conducting cross-national research, particularly between rich and poor countries and those with poor human rights records." What complicates the matter is that China has been developing its own genetics industry, creating a gene bank of about 50 ethnic groups, but without the ethical concerns of major biotech companies.

Scientists have embarked on a worldwide search for genetic samples. Most enlightening for the purpose of linking rogue genes to inherited diseases is the detailed study of an isolated community. For example, the 270,000 inhabitants of Iceland are a source of great interest to geneticists because they all have their origins in a single group that settled on the island roughly 1,000 years ago. As there has been very little contact with other peoples, strong homogenous characteristics have been preserved.

The 'Iceland case' has achieved notoriety over the past two years because of the way genetic information has been gathered. On 17 December 1998 the Icelandic parliament passed a law that effectively allowed a private genetics firm unlimited access to the population's medical and genetic data without requiring consent from each individual. The firm in question was deCODE Genetics, set up by geneticist Kari Stefansson with the help of US capital.

The Icelandic law concerning access to genetic information states that: "It would take great effort, time and money to gain consent from every individual." Instead, the government requests a coding system that makes the data anonymous. The data can only be reconstructed with a decoding key.

This encryption technique has done little to appease opponents of gene accessibility. A group has been set up in Iceland under the name of Mannvernd, protesting that the law is an attack on human rights.

In contrast to Icelandic outrage, a gene programme in Estonia has gained approval from local people. One major difference is that Estonia's research project is to be administered by a government-controlled foundation rather than allowing a commercial company exclusive access to the people's records. "We won't make the same mistakes as Iceland," said Jaanus Pikani, chairman of the supervisory board of the Estonian Genome Foundation.

Pikani hopes that research work can begin early in 2001. The foundation's initial plans include commissioning a pilot study with 10,000–20,000 people. Although Estonians cannot be traced back to a single people in the same way as Icelanders, this is of no concern to Pikani because his research will not focus on isolated, hereditary diseases. It is important to the Estonian Genome Foundation that the study covers a more representative sample.

A major incentive for the Estonian government is the potential revenue a gene bank could bring into the country. But first the $100 million cost of the project must be covered and it may prove hard to attract private funding without giving up control of the programme.

Another country hoping to boost its economy through genetic research is the pacific archipelago of Tonga. Australian genomics company Autogen Limited has been working on genetic discovery programmes throughout the South Pacific for a number of years and has recently announced a collaboration with the Tongan government.

Isolating a gene that's common to a particular family is much easier if the population has been isolated, that is why Tonga — a collection of 170 islands colonised by Polynesian people almost 3,500 years ago — is so appropriate for Autogen's research.

"The less mixture of inter-racial marriage, the more likely you are to be able to determine a particular gene that may be responsible for a particular disease, whether it's breast cancer or whether it's kidney disease," said chairman of Autogen, Joseph Gutnick.

Professor Greg Collier, Autogen's chief scientific officer, was keen to emphasise to BioMedcentral that his research is very different to what has been seen in Iceland. "This is a research collaboration between Tonga and Autogen to explore genes and disease together," he said. "We will not be working with the entire population, only groups of individuals that volunteer to be included in the studies," he added.

Collier is adamant that only Tongans who want to be involved will volunteer and that it will be a fully informed consent process with no obligations.

He explained the usefulness of Autogen's Tonga project: "We will be collecting information on common diseases of 'affluence' — including cardiovascular disease, hypertension and certain cancers. If genes are linked with disease outcome we will hopefully highlight new biological pathways involved in the diseases process which will provide us with new targets to develop therapies."

Autogen's Tonga research, when contrasted with gene projects in China and Iceland, highlights the need for a healthy collaboration between governments and private companies as well as a consideration for the individual.

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