Table II.

Themes

Theme 1: Preferences and decisions regarding return of results may depend on research context.

The nature of the result itself and its implications for prevention or intervention were seen as important considerations in deciding whether or not to receive the result.

Mothers differentiated between receiving results for themselves and results for their babies.

Perceived benefits of results reporting and reactions to procedures for storing samples for later analysis could impact decisions about the return of results.

Theme 2: Preferences and decisions regarding return of results may depend on individual contextual factors.

There is significant variability among mothers in the perceived risks and benefits of return of results, and differences are related in part to individuals’ subjective reactions to and knowledge about family disease or medical history and prior experiences.

Current life circumstances, including access to economic, healthcare and other resources, and beliefs about personal control over life events and outcomes, may attenuate or amplify potential harms of information disclosure and influence decisions to receive results.

Perceived emotional risks of receiving results, anticipation of negative emotions and expected effects on quality-of-life and parent-child relationship.

Theme 3: Participants desired an interpersonal, dynamic, flexible process that accommodated individual preferences and contextual differences for returning results.

Decisions about return of results are not perceived as immutable.

Making decisions beforehand is difficult.

Experience may lead to different choices over time.

The timing of the return of results could influence the possible emotional risks and benefits of genetic information.

The methods used to return results could reduce or increase harms.

Decisions about the return of results and the impact of disclosure of individual findings can be affected by the interaction between characteristics of the person and the research context.