Understanding science and its implications is a human right, argues Xiong Lei, in this perspective from China.
To many people, the life sciences are a purely academic realm, about which only 'experts' have a say. Yet advances in biotechnology are increasingly affecting people's basic rights, including the right to know about and understand aspects of research and development that affect our daily lives.
Take for example genetically modified (GM) food. In China, no official permit to sell GM rice has ever been issued, yet GM rice has reportedly found its way into consumer markets in parts of central and southern China. Before that, oil made from imported GM soybeans came close to dominating China's edible oil market even though there had never been any public debate of the matter.
In theory, it seems obvious that we should have the right to know about and choose the food we eat. In reality, however, this cannot be guaranteed.
First, in China, the decision to release GM crops for commercial use is often made behind closed doors, where biotechnologists tend to have the most say. Indeed, an investigative report in Southern Weekend last November (2004) disclosed that two-thirds of the 58-member biosafety committee under the Ministry of Agriculture are biotechnologists.
Second, although regulations require food products containing GM products to be identified, the rules only cover 17 foodstuffs. Milk powder, for example, does not come under this listing even though it contains GM products.
Not just GM
GM food researchers are not the only life scientists to ignore people's rights. There have been numerous occurrences in which researchers have taken blood or saliva samples from farmers, without seeking their prior informed consent, under the guise of a free medical check-up or treatment. Rural people with HIV/AIDS have been unknowingly lured into participating in clinical trials of HIV drugs by researchers who say they will save their lives.
A typical case of this was reported early in 2004. It involved a US company and a hospital in Beijing. Together they recruited nearly 40 HIV-infected farmers from Henan province in 2003 for a drug trial without the farmers knowing they were being involved in the trial. The farmers competed to participate, assuming it was an opportunity to get good treatment. Two months into the trial, two farmers died.
Unbelievably, all the participating farmers were asked to sign a document that was full of terms they could not understand. Later, when the farmers challenged the hospital, they were told the document they had signed was the informed consent agreement. Yet none of the farmers was given a copy of the agreement. They were charged 48 yuan (US$6) for a copy when they tried to use it to sue the hospital and the US company.
These are ethical issues. But human rights lie at their core. Our continued neglect of the relationship between biological research and our lives has led to a number of misconceptions.
The first of these is that life sciences should be the realm of academics alone. Much applied biological research could not happen without people volunteering to participate in it, or to donate organs, blood, cells or genes as research materials. It is unethical and immoral to ask people to participate without acknowledging their rights.
Another misconception is the assumption that all research serves noble goals and benefits humankind. Scientists can be driven by selfish interests. Although the Nüremberg Code and the Helsinki Declaration, among others, exist to guide clinical research, scientists can be tempted to ignore them in exchange for money and fame.
Unethical research can be easier in developing nations
Many regulations on research ethics were made when developing countries had little say in international affairs, so they may not take full consideration of the particular conditions there. For example, levels of literacy tend to be lower in developing countries, which makes obtaining informed consent in its true sense more difficult.
A further misconception held by some researchers and administrators is that developing countries do not need requirements for informed consent to be as rigorous as they are in industrialised nations. This notion has led to the poor enforcement of research regulations and legislation.
In the mid-1990s, a team of US researchers came to China's Anhui province to carry out projects in human genetics. Their Chinese partners knew little about regulations on informed consent and the issue was not raised until the ethics of the projects were challenged.
The Chinese administration in charge of human genetic resources expected the US team to produce a working contract, which they would then approve. And, although the Chinese authorities officially approved only three projects in one year, at least 15 projects were going on in Anhui province.
Thus, research that is forbidden in developed countries can sometimes be undertaken with no barriers in China.
Another example came about when US researchers moved their human stem cell research to China after it had been banned on ethical grounds by the US government in 1998. In 2003, the research led to the creation of foetuses that would have produced babies with three genetic parents. Only later was the research banned by the Chinese government.
Access to knowledge is a human right
The right to knowledge should be upheld more strongly in developing countries. Researchers should make greater efforts to give full information to the communities involved in their research, particularly in areas where literacy is low.
Institutional ethics review boards must not exclusively consist of experts. They should also include members of the public. Equally, potential research projects should not be reviewed solely by other researchers. To ensure that life science research does not threaten human rights, the public must have a say. Research that is not scrutinised by the public risks not meeting society's needs.
Informed consent should not be a mere contract for research participants to sign. It should be a process during which each participant is given adequate information about "the aims, methods, sources of funding, any possible conflicts of interest, institutional affiliations of the researcher, the anticipated benefits and potential risks of the study and the discomfort it may entail", as stated in the 2000 version of the Helsinki Declaration.
Finally, if the researcher regards obtaining adequate consent as impossible because locals are too poorly educated to understand the issues, they should abandon the research rather than exploit participants.
Xiong Lei is executive editor at China Features.