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Ethics of research

The Fiji National University
Friday, March 01, 2013

IMAGINE a fictional group of overseas researchers going to a remote Fiji village to collect samples for a genetics study of blood sugar levels from almost all 400 villagers.

They have the appropriate approval from the Fiji National Research Ethics Review Committee and have talked with local authorities including the village headman.

Their study includes "public data release", which means they put their analysis of the genetic information on internet so other scientists can use it.

This is explained to the villagers, who mostly have never used a computer or know much about internet, and although they don't seem to fully understand they are willing to take part.

The study is done and duly published, and later a second analysis of the data with blood pressure information is published.

The genetic and individual's personal information is anonymous as promised, but the researchers name the village in their acknowledgement to thank the community.

This is criticised by the ethics board in the researchers' own country on the grounds it is an unacceptable risk that may allow the participants to be identified. The board also discovers the blood pressure analysis was performed and published without specific ethical approval.

This leads to a media scandal headlined "researchers misuse samples from vulnerable community" in the researchers' home country and results in the resignation of the senior researcher.

Or what about a fictional Fijian businessman who emigrates to the US and when he applies for health insurance the company offers him a free "genetic screen" before issuing the policy?

He is normally in good health, knows little about genetic research, so he goes ahead with the test.

But the insurance company then tells him his insurance policy will cost almost double because the test has shown he has a very high risk of getting diabetes.

All the insurance companies he tries ask him to declare whether he has had a genetic test that shows any increased risk, and when he does the cost of the policy doubles.

He decides not to take health insurance, but soon afterwards develops a sudden illness and cannot afford treatment.

These are two of the imaginary situations that a recent Fiji National University workshop on human genetics and health discussed in a session on ethical, cultural and social aspects of genetic research.

Concerning the unfortunate businessman, the participants said the fictional insurance company should have told him what could happen if the genetic test showed a risk, and that he probably should not have taken it.

However having taken the test, they felt he should be concerned about the health risk even though it was only slightly higher than in the general population.

They felt both the man and the insurance company were to blame for him not having health cover and that the increase in premiums was too high.

Concerning the imaginary village blood sugar and blood pressure study, participants felt the researchers had behaved ethically and sought the appropriate approvals, although if they had been more familiar with the closeness of the Fiji village world, they would not have named it publicly.

Taking blood pressure would have been a normal part of a blood test and shouldn't need extra permission, most people said.

The discussion raised many of the Fiji ethics procedures already in place and planned, and the need to involve local authorities in research studies.

The Ministry of Health and FNU's College of Medicine, Nursing and Health Sciences are among those already represented on the committees and boards concerned with medical and research ethics and procedures.

Workshop participants said there was a need for people familiar with local custom and attitudes, not only languages, to accompany researchers to avoid misunderstandings, such as silence not necessarily implying consent.

A speaker explained the permission of the headman or "turaga ni koro" is valid only to allow a research team to speak to the village community, he cannot give consent for a study on behalf of the community.

However, his approval to participate in a study for the good of the community or the wider society could be influential in persuading people to be involved.

Another speaker pointed out the concerns surrounding the appropriate storage of information collected from research, so that it remains available to scientists and researchers but is safely stored to remain confidential and anonymous.

These discussions of imaginary situations to examine the ethics of research followed presentations by an international team about genetics research.

A research study, called the Human Genome Project, has been collecting information around the world for the past 11 years to dramatically improve understanding of how human genes are involved in many different diseases, leading to a better knowledge of people at risk of certain illnesses and disabilities and to better treatment.

So far the genetic information collected is mostly about people of European descent, almost entirely leaving out the people of the Pacific Islands.

FNU research fellow Dr Santha Muller and her team genetics experts organised the recent workshop at the College of Medicine, Nursing and Health Sciences with the aim of exploring human genetics research in Fiji and the Pacific islands.

She said it was intended to add the genome to those already available to scientists on public data bases, as well as investigate the health benefits of basic science research in Fiji.

Dr Magda Ellis of the University of Sydney gave an introductory paper on the potential of genetics research in places that had few resources for such work, giving examples of projects in rural China looking for genetic risks of infectious diseases such as tuberculosis.

She described the importance of such research in different populations for both infectious and non communicable diseases.

Dr Andrew Steer of the University of Melbourne described a 2005 study with the Fiji Ministry of Health, FNU's Fiji School of Medicine and Australian universities to investigate Group A Streptococcal disease (GAS), which includes rheumatic heart disease and has a disproportionately large impact in the Pacific.

He said the study showed the potential and challenge of conducting basic science research alongside disease control.

It had already had an impact on GAS disease in Fiji, including the screening of more than 10,000 children for heart disease, he said.

Dr Tom Parks of Oxford University described the design of a project to develop a scientific data base of genetic information from healthy iTaukei Fijians that will involve taking blood samples from about 110 people, including mother, father and adult child groups from the same families to obtain the DNA that makes up the genome.

Dr Parks said the information would be put online so scientists and others could use it and some samples would be stored for future genetic research.

In her presentation, Dr Muller announced an international standard medical research laboratory had been established and equipped at the College of Medicine, Nursing and Health Sciences at Tamavua.

Opened on Wednesday earlier this week, it will be used for teaching and research, providing services for medically-trained students and biomedical researchers, initially in genetics, immunology and pathology.

Dr Muller said it would ultimately extend its applications to areas such as environmental biology, marine biology and related areas and share its facilities with other Colleges of FNU. In future it would provide consultation and advanced laboratory services for CWM Hospital patients and to physicians for diagnosis in Fiji and Pacific islands.

Dr Muller said the laboratory would bring collaborations with other international labs and institutes and funding for research and publications.

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