Bioethics reporting in China: a case for bold action

Journalists in China — as elsewhere — have an important function to play in reporting on how science and technology affects people’s lives.

One of the key roles of journalists is to patrol the boundaries between the state and the citizen. Even in one-party systems like China where political freedoms are constrained, there are topics about which the government appears to accept the press’s contribution in the adoption and effective implementation of responsible policy.

A workshop held in Beijing last week highlighted one such subject: bioethics. The term was interpreted broadly to cover the social impacts and ethical consequences of the life sciences, involving issues that ranged from human cloning to euthanasia and the distribution of medical care.

Several lessons emerged from the workshop, which was organised by SciDev.Net, the Medical Ethics Branch of the Chinese Medical Association and the British Council, with additional support from the British Embassy and Peking University’s Medical Ethics Centre.

One lesson is that journalists can draw attention to gaps between the regulations — drawn up to ensure that scientific developments are handled in a socially responsible way — and what actually happens in a practice.

Such gaps are not unique to China. Indeed, they can appear in any country where rapid scientific and technological advances outpace society’s ability to regulate such changes effectively.

But with change occurring in China at an unprecedented rate, the need for journalists to monitor and report on how science and technology impact on individuals and communities has become more important than ever.

External pressures

Part of the pressure for more effective regulation of the life sciences comes from China’s desire to be more closely integrated into the global economy. China is keen to attract foreign pharmaceutical companies to carry out clinical trials of new drugs on populations that offer several advantages — including lower costs — over those in the West.

Journalists have been quick to highlight instances where such trials appear to have crossed the line of what is regarded as ethically acceptable. One particularly sensitive issue, for example, is whether participants have given adequate ‘informed consent’. Indeed, media reports of such controversies have helped persuade the government to tighten up in this area (see China to release tougher rules for research ethics).

Another way in which journalists have played an important role is in exposing scientific fraud. One session at the workshop explored how it was South Korea’s press — and not its scientific community — that was largely responsible for the downfall of the stem cell researcher Hwang Woo Suk, by exposing his false claims to have cloned human embryos.

One of China’s leading bioethicists, Qiu Renzong of the Chinese Academy of Social Sciences, dispelled any complacency that similar fraud could not occur in China.

Qiu told the workshop that many of the factors thought to have led to Hwang’s downfall — such as pressure on researchers to produce ground-breaking new ideas for profits and national pride — are also present in China. According to Qiu, the question was not whether China was likely to experience a similar episode, but when.

Responsible reporting

Speakers also emphasised that effective reporting must be accurate, particularly regarding the science . Stories about cloning, for example, need to distinguish between the ‘reproductive cloning’ of whole living organisms (including humans) and ‘therapeutic cloning’ of cells to treat diseases.

So far China has not banned reporting on unethical or controversial biomedical research. But journalists trying to investigate such stories are often frustrated by the challenge of achieving technical accuracy, or by the continued reluctance of many scientists to talk to them. As a result, few stories cover the ethical issues arising from biomedical research in China.

But when science journalists do write about such topics, they also find themselves confronting non-scientific issues that raise different challenges. Indeed, the workshop demonstrated how reporting on bioethics can mean addressing many of the key challenges facing Chinese society today.

One is the question of corruption, and the related misuse of authority. The issue is frequently covered in the media, but is usually limited to prominent public figures. Science reporters have shown that the problem also exists in the life sciences, whether it is in faking results to obtain promotion, or fudging informed consent requirements to push through lucrative clinical trials.

Another issue is transparency. Unethical practices thrive where there is a lack of public scrutiny. But evidence-based dialogue becomes impossible if, for whatever reason, individuals in power use their authority to limit access to information or data that should be in the public domain.

The lack of transparency also poses a challenge to good reporting. Hospitals that are not prepared to make the effort to fully inform participants about the full details of clinical trials tend to be equally reluctant to talk to journalists about the details of such research.

 

The Chinese government has shown itself willing, in principle, to move forward on each of these issues. For example stiff new penalties have been introduced for those found guilty of abusing public trust by perpetrating scientific fraud.

Furthermore — partly due to pressure from international organisations such as the World Healthy Organization — official data on the spread of diseases such as HIV/AIDS or SARS are more readily available than they were a few years ago.

Breaking with old habits

But old habits are hard to eliminate. Some journalists feel that official data on such diseases tends to understate the real extent of outbreaks. And when military researchers found that China’s first human case of the H5N1 strain of bird flu had occurred in 2003 — not 2005 as previously supposed — no one informed the civilian health authorities.

In a more recent incident, journalists were excluded from covering the 8th World Bioethics Congress in Beijing in August. The organisers said that the reason for their exclusion was fear that representatives from the Falung Gong sect might hijack press conferences to highlight allegations about the use of human organs taken from live prisoners against their will.

The concerns of the organisers may have been justified. But to react by banning all press involvement in the meeting appeared to many participants — as well as to journalists keen to write about the issues under discussion — to be excessive.

In fact, the journalists’ exclusion also reveals an attitude held by both officials and many senior researchers in China that contentious issues raised by modern science, including ethics-related ones, should be left to the elites, rather than be widely discussed among the public.

But given that the scale and impact of these contentious issues are likely to grow with the increasing impact of the life sciences on the lives of individuals and communities, the need for responsible reporting on these issues can only become more urgent.

As it does, journalists who report on the social and ethical impact of the life sciences — and on reactions to these impacts by both individuals and government authorities — will be performing an important public duty.

Indeed, it can be argued that by reporting on the human side to science, journalists are creating an important cultural space for discussing such profound topics as the definition of life, death and human dignity — each seen through the prism of bioethics.

An active public debate on these issues, stimulated by responsible reporting, is likely to be far more effective than international pressure in helping to ensure that China’s new scientific and technological revolution comes with an appropriately human face.

David Dickson
Director, SciDev.Net

Jia Hepeng
China regional coordinator, SciDev.Net