Bioethics Blogs

Beyond the Results: Context is Key

By Anne Meade, senior manager for website and social media

Not that long ago, genome sequencing was something most people did not have as an option available to them. Fast-forward 13 years later from when the human genome was first sequenced for $3 billion, and companies have announced that that they have machines available that “can sequence the genetic code of a human cell for $1,000.” As genome sequencing has become more affordable and accessible, an ethical challenge becomes helping people interpret what their results mean to them, their health, and their futures.

In her interview for People and Perspectives, Carol Weil, program director for ethical and regulatory affairs at the National Cancer Institute, discusses the importance of context when assessing the risk of returning research results to participants. If people take part in research and want to be informed of the results garnered during the course of that research, one could argue they have that right. But the lack of understanding they possess about the information—and its current applicability to known diseases and conditions—can be anxiety-producing. Weil explains that advancements in technology mean it is not complicated to provide the information, but the value of the information and its interpretation can be difficult – “Is there a way to tell someone something that doesn’t provoke more anxiety and cause more harm?”

Weil admits that there are various schools of thought about this and that there is no single answer applicable to every situation. You are going to find different answers in different contexts.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.