From Expectations to Experiences: Consumer Autonomy and Choice in Personal Genomic Testing

Area of Science:

• Bioethics
• Genomics
• Consumer Behavior

Background:

• Personal genomic testing (PGT) provides genetic insights for wellness, health, and traits.
• Online accessibility of PGT is growing, including in Australia.
• Consumer expectations and alignment with bioethical concepts like autonomy require further investigation.

Purpose of the Study:

• To explore consumer attitudes and experiences with personal genomic testing (PGT).
• To assess whether consumer reflections on PGT align with bioethical concepts of autonomy.
• To critically interpret PGT findings in light of bioethics scholarship.

Main Methods:

• Conducted seven focus groups with 56 public members (limited PGT experience).
• Performed semi-structured interviews with 40 individuals who had undergone PGT.
• Utilized thematic analysis for transcription and critical interpretation referencing autonomy scholarship.

Main Results:

• Participants valued the choice offered by PGT and its potential to motivate action.
• Focus groups highlighted perceived value of choice, knowledge for action, and self-knowledge.
• Interviewees showed reflexive engagement with PGT data, acknowledging limitations; however, substantive autonomy was not always achieved.

Conclusions:

• PGT consumers demonstrate critical reasoning but may uncritically accept results or overestimate behavioral impact.
• Consumers achieve autonomy without company support, while companies promote a "default" autonomy linked to empowerment rhetoric.
• The expansion of PGT necessitates careful claims regarding its power and value, as consumers may make decisions inconsistent with their higher-order desires.