The only way is ethics
There’s a group of researchers at the NDPH who don’t run clinical trials or population studies, or do experiments in the lab. They don’t crunch numbers or analyse statistics. Instead, they’re focusing on a quite different aspect scientific work: ethics.
Any research involving people raises big ethical issues. For example, what kind of experiments or investigations are OK? How do scientists make sure study participants know what they’re getting involved in and consent to it, and aren’t being exploited? How should researchers use and protect personal data? How can scientists make sure they’re behaving ethically when it comes to collaborating with others, particularly across international borders? And how should complex information about genetics, which could have wider implications for someone’s family, be communicated and used?
All of these questions – and many more – are what interests Professor Michael Parker and his team at the NDPH. Parker directs the Ethox Centre – an internationally respected hub of biomedical ethics education and research – and is also director of the Wellcome Centre for Ethics, Innovation, Globalisation and Medicine.
Embedding ethics in research
“The doctors and scientists we work with are very ethical, and they generally want to do science well,” Parker says. “But this can require careful thought – especially research with children, in emergency situations, or in low income settings.”
In the UK, proposals for research projects involving human participants require formal approval from a research ethics committee, to protect their rights, dignity and welfare. But although Parker and his team will help researchers make sure their proposals will get ethical approval, he’s primarily interested in finding effective ways to embed ethical thinking and practice right the way through the research process.
Parker is particularly interested in what happens after a project is approved and gets underway. “That’s when the ethical thinking really needs to start!” he says. “I’m talking about the day to day decisions that need to be made once a project is underway. Ethics has a reputation as a hurdle that has to be overcome – something that just gets in the way. But thinking about the ethical aspects of your work is a vital part of being a scientist, right from the start. This includes thinking about participants and issues around consent and confidentiality, but also about collaborating ethically – sharing data and materials, and assigning credit in a fair way.”
Rather than focusing on lofty philosophical problems, Parker and his team focus their thinking and research on the day-to-day ethical questions and issues that doctors and scientists will come across in their regular work. As Parker explains, “Ethics research projects are aimed at coming to conclusions about what good practice looks like, and what should or shouldn’t be done in the circumstances. We don’t want to jump to conclusions, so we need a strong sense of context, and to know what researchers are actually doing.” They work closely with scientists to understand what they are doing and the questions they’re asking, to uncover situations that pose ethical challenges. And – with some careful thinking – work out the best way to resolve them.
Many of today’s population-based studies and clinical trials are global efforts, with scientists from high and low income countries working in collaboration. At the same time, it’s vital to make sure that research participants – and scientists themselves – aren’t being exploited. The John le Carré book The Constant Gardener, made into a film starring Ralph Fiennes and Rachel Weisz, highlighted the example of a pharmaceutical company fraudulently testing a drug on people in Kenya. Although this story is fiction, examples of similar unethical practices have happened in real life too. Careful embedded thinking about the ethics of research projects can play an important role in helping to stop this from happening in future.
Even in research conducted to high ethical standards, cross-border collaborations can raise novel ethical challenges, and people in different countries can have different ideas about what’s appropriate or not. A good contemporary example of this concerns the sharing of data for research. Together with partners in Africa, South East Asia and South Asia, Parker and his team recently carried out interviews and focus groups with scientists, community members, and ethics committee members in five countries - India, Vietnam, Thailand, South Africa and Kenya – to ask what they thought good data sharing practice should look like, and what they’re concerned about. The team found that broadly there was a lot of support for sharing data between scientists in different countries to improve knowledge about health and disease, but all wanted effective safeguards and checks to make sure data is only used in appropriate ways.
Parker’s team also uncovered more practical ethical concerns. “One particular worry is that if data and samples all go to high income countries, you don’t build scientific capacity in low income settings,” he says. “Researchers in poorer countries can sometimes feel like they’re just collecting data and samples to send off elsewhere. This might be due to a lack of scientific training and capacity, but also a lack of lab equipment and infrastructure – for example, you can’t store DNA samples if you don’t have a reliable freezer.” One solution might be to demand that organisations funding research provide money for equipment, training and capacity-building in low income countries. Another aspect of this is to ensure that researchers in low-income settings get proper credit for their contributions.
21st century ethics
The tools available to modern researchers are changing rapidly, and with them come new ethical challenges. For example, neuroscientists can study the brain in greater detail than ever before, and maybe one day even manage to manipulate people’s thoughts. And there’s a big drive towards research into neurodegenerative conditions such as Alzheimer’s disease. How can neuroscientists make sure that study participants have given valid consent to take part in such research, especially if they have thinking and memory problems?
Advances in gene reading technology also bring ethical issues, particularly around data and privacy. Scientists and private gene testing companies now have the ability to read a baby’s genes at birth, and in the near future may be able to do this even when it is still in the womb through non-invasive blood tests. “This could be a great resource or a big problem for a child’s future life,” says Parker. “What should society think about this? And how do we make use of these tests and the information from them? Technology and social structures are moving so fast, but the legal and ethical frameworks are not keeping up.”
There’s also the ever-growing world of ‘big data’, as researchers gather huge amounts of information about people – including about their health and genetics – and crunch it all together. This kind of research could bring huge benefits, but only if concerns about consent, privacy and more are properly addressed. To solve these challenges, Parker argues that we need to think about what an ethical framework for the 21st Century should look like – and this is the task that the Wellcome Centre for Ethics, Innovation, Globalisation and Medicine has set for itself.
“We need to do careful thinking with scientists and the public about what ethical research looks like,” he says. “I’m wary of attempts to come up with ethical frameworks in the abstract. We don’t live in an ideal abstract world, and we need to engage with real problems. And our ethical guidance needs to be timely, sensible and evidence-based, rather than hasty or kneejerk. It can’t be seen as lofty statements coming from the ivory tower – ethical frameworks need to be embedded in the research community and generated in conversations involving scientists, patients and the public – and ethics specialists, of course. Ultimately, we want to see lots of science, but we want to see it done well. It’s how we’re going to make a difference to the world.”