title: Exploring the Potential Emotional and Behavioural Impact of Providing Personalised Genomic Risk Information to the Public: A Focus Group Study.
abstract: OBJECTIVE
  To explore the potential emotional and behavioural impact of providing information on personalised genomic risk to the public, using melanoma as an example, to aid research translation.
  
  
  METHODS
  We conducted four focus groups in which 34 participants were presented with a hypothetical scenario of an individual's lifetime genomic risk of melanoma (using the term 'genetic risk'). We asked about understanding of genetic risk, who would choose to receive this risk information, potential emotional and behavioural impacts, and other concerns or potential benefits. Data were analysed thematically.
  
  
  RESULTS
  Participants thought this risk information could potentially motivate preventive behaviours such as sun protection and related it to screening for other diseases including breast cancer. Factors identified as influencing the decision to receive genetic risk information included education level, children, age and gender. Participants identified potential negative impacts on the recipient such as anxiety and worry, and proposed that this could be mitigated by providing additional explanatory and prevention information, and contact details of a health professional for further discussion. Participants' concerns included workplace and insurance discrimination.
  
  
  CONCLUSIONS
  Participants recognised the potential for both positive and negative emotional and behavioural impacts related to receiving information on the personalised genomic risk of melanoma.
authors.affiliation: Cancer Epidemiology and Services Research, Sydney School of Public Health, The University of Sydney, Sydney, N.S.W., Australia.
authors.forename: Amelia K
authors.initials: AK
authors.lastname: Smit
authors.forename: Louise A
authors.initials: LA
authors.lastname: Keogh
authors.forename: Ainsley J
authors.initials: AJ
authors.lastname: Newson
authors.forename: Jolyn
authors.initials: J
authors.lastname: Hersch
authors.forename: Phyllis
authors.initials: P
authors.lastname: Butow
authors.forename: Anne E
authors.initials: AE
authors.lastname: Cust
mesh_terms: D000293:Adolescent; D000328:Adult; D000368:Aged; D001943:Breast Neoplasms / Q000235:genetics / Q000523:psychology; D004644:Emotions; D005260:Female; D017144:Focus Groups; D020022:Genetic Predisposition to Disease / Q000235:genetics; D030661:Genetic Privacy; D005820:Genetic Testing; D023281:Genomics; D015438:Health Behavior; D058015:Health Communication; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D008297:Male; D008545:Melanoma / Q000235:genetics / Q000523:psychology; D008875:Middle Aged; D057285:Precision Medicine; D012307:Risk Factors; D012878:Skin Neoplasms / Q000235:genetics / Q000523:psychology; D013473:Sunscreening Agents / Q000627:therapeutic use; D014342:Truth Disclosure; D055815:Young Adult
chemical_list: D013473:Sunscreening Agents