Ethics and Stories

Last week, I had the great good fortune to speak briefly at a panel discussion about ethical issues in storytelling in health care settings.

Here are some of the things I heard, all of which I'm pondering:

* People carry with them a lifetime of stories--some cultural that stretch back generations, and some unique to them.

* People may be wary of sharing personal stories without knowing who they're talking to.

* People's stories are gifts, and those hearing them should listen with gratitude and respect.

* People's stories represent their reality--their truth.

* People seeking health care are always vulnerable, because in our health care system, the power (of knowledge, not to mention intangibles like community prestige and social class) rests with the practitioner. Vulnerable people may or may not be willing to share a story that makes them even more vulnerable.

* People who share stories may be especially vulnerable in the moment of sharing them, and anyone who asks them to share their stories should be ready to care for that vulnerability.

* People and communities are more likely to work with those who have taken the time and put in the energy to form long-term, mutually beneficial relationships.

* People may mean different things by the term "healing."

* People can tell their own stories.

* People can say "no" when you ask them to share a story, and we should hear them.


* that research projects in a community should be led by the community's questions and initiative,
* that "informed consent" may or may not really communicate the real vulnerability of sharing a story in public,
* that different people hear the same story in different ways,
* that it's important to wrestle with ethics around stories and ownership and respect.

Because, see above, stories are gifts. Which it's always good to be reminded of.