A new report from the Nuffield Council on Bioethics is emphasizing the ethical issues that often arise when patients opt for experimental medical treatments. From stem cell therapies to expensive fertility treatments, experimental procedures are controversial and risky.
Recent headlines on the topic have exposed stem cell-engineered transplants that proved fatal, as well as stories about couples who felt ripped off after paying for expensive fertility treatment “add-ons.”
Success stories have also emerged, however, including the miraculous recovery of a one-year-old girl who had leukemia. The baby was cured by the use of a new gene editing technique that modifies immune cells, and she remains cancer free.
Experts at the Nuffield Council on Bioethics have set out to inform the public of how experimental treatments are regulated, how they may be accessed, and some of the ethical issues that healthcare professionals and patients must recognize. The briefing is focused on gene and stem cell therapies, surgery, and fertility treatment.
According to the Council, there is often a lack of evidence or research to guarantee the safety of an experimental procedure. Challenges also arise regarding consent, particularly when a child is receiving the treatment. The report also points to the ethical issues of deceptive online marketing and the motivation of healthcare providers.
“Often, experimental medical treatments are considered as a last hope, when all other options have been exhausted,” explained Council Director Hugh Whittall. “It is completely understandable that people in this position might be willing to try anything and everything they can, despite uncertainties about the efficacy or safety of the treatment, and the likelihood of there being significant costs involved.”
“A key challenge is balancing the interests of patients with ensuring they are protected from harm, particularly if treatments are offered outside of UK regulation. It is important that patients and their families have access to impartial and accurate information, and are made aware of uncertainties about possible outcomes when making a decision about trying an experimental treatment.”
“We will be raising these issues with Government and working with regulators, and we are following up this piece of work with a new project exploring how disagreements can develop about the care of critically ill children, and how those disagreements are being resolved.”
The Nuffield Council on Bioethics is an independent body that has been advising policy makers on ethical issues in bioscience and medicine for more than 25 years. The current report is the fourth in a new series of bioethics briefing notes published by the Council.
By Chrissy Sexton, Earth.com Staff Writer