GenEthics: Considerations for biotech and healthcare

Academics and philosophers are hotly debating what the advances in genetics could mean for society – particularly when it comes to testing for predisposition to conditions like cancer and heart disease. This discussion of ‘genEthics’ is not just philosophical. It covers everything from law to psychology, and from sociology to medical research and biotechnology.

For life sciences and healthcare firms, transforming knowledge into a competitive advantage is key. But any commercial application of knowledge gained from genetic testing cannot come at the expense of a careful consideration of the real world complexities of ‘genEthics’. Genetic research deals quite literally with our humanity, so advances in genetic testing require detailed consideration of the social, political, economic, legal and philosophical implications. For example:

• What benefits will emerge from these developments?
• Who will have access to these benefits?
• What is the foreseeable harm or risk of these developments? For example, how could the knowledge or technology be abused or misused?
• How will developments be regulated and controlled?
• How will the interests of individuals, families, businesses, and society as a whole be protected?
  Advances in genetics should be supported – so long as there is research that demonstrates the advances to be safe and effective, and providing the appropriate regulatory and social supports are in place (such as genetic counselling and the protection of genetic information).

Regulation should always work in the public interest. It needs to be strong enough to warrant public confidence, yet flexible enough to encourage research and development. At an international level, we also need more awareness of genetic health issues and improved public participation in future debates about genetic testing, including what it will mean for the way our healthcare services are provided.

The predictive power of genetic information is unprecedented. In 1992, public health researcher and futurist Jeff Goldsmith described how it will reshape healthcare models, which will have to change from ‘diagnose and treat’ to ‘predict and prevent.’

Goldsmith envisages healthcare providers having to adapt to a new category of ‘patient’ – a healthy person with a confirmed genetic predisposition to a certain disease. It is likely that even a small shift in the number of people seeking pre-symptomatic advice will change the dynamics of a country’s healthcare system.

Broader considerations

The UK already has a Code on Genetic Testing and Insurance. It’s an agreement between the government and the Association of British Insurers, setting out what an insurance company is allowed to know about someone’s history of genetic testing when they apply for insurance.

And for employers across the board, auditing workplaces for environmental factors that may trigger or aggravate genetic conditions could become standard practice. It could become mandatory to notify all employees of identified risks and the diseases they’re associated with, so that employees can take steps to protect their own health. In this scenario, the employees’ genetic information remains private. This would ensure that employers could not, for example, discriminate against an individual with a predisposition to a genetic disease that could affect their ability to work.

Although many of the early promises made about the enormous potential of genetics are yet to be fully realised, now is the time to resolve the contentious issues it raises – and to discuss how it could improve our shared future.

This article was produced in collaboration with Dr Rachel Iredale, consulting director with RSM Ireland, and our global healthcare specialists. Please contact Rachel or the team to discuss any of the issues raised in more detail.