Young people's moral attitudes and motivations towards direct-to-consumer genetic testing for inherited risk of Alzheimer disease.
Eur J Med Genet
; 64(6): 104180, 2021 Jun.
Article
in En
| MEDLINE
| ID: mdl-33781925
ABSTRACT
PURPOSE:
Since the U.S. Food and Drug Administration approved sales of genetic tests for late-onset Alzheimer's disease (LOAD) risk, a heated debate has arisen over whether these tests should indeed be offered online and direct-to-consumer (DTC). As this debate progresses, it is important to understand the ethical perspectives and motivations of young people, who are a key target group for DTC services.METHODS:
Thirty-one grandchildren of people with LOAD, aged 16-26, were interviewed about their moral attitudes and motivations with regards to DTC genetic testing for LOAD.RESULTS:
Even though most participants claimed that people should have the right to access these services, they also expressed concerns about potential distress in response to learning about risk, particularly for minors. About a third were interested in testing, primarily to gain self-knowledge regarding one's health; however, face-to-face services were vastly preferred over the online option.CONCLUSION:
While DTC genetic companies often market their services as a "fun consumer product", DTC testing for LOAD was largely understood as a serious health screening procedure and a vulnerable moment in the lives of young people in Alzheimer's families. This points to the importance of appropriate standards of information and support to young people pre- and post-testing.Key words
Full text:
1
Collection:
01-internacional
Database:
MEDLINE
Main subject:
Health Knowledge, Attitudes, Practice
/
Genetic Predisposition to Disease
/
Alzheimer Disease
/
Direct-To-Consumer Screening and Testing
/
Genetic Carrier Screening
Type of study:
Etiology_studies
/
Prognostic_studies
/
Qualitative_research
/
Risk_factors_studies
Aspects:
Ethics
Limits:
Adolescent
/
Adult
/
Female
/
Humans
/
Male
Language:
En
Journal:
Eur J Med Genet
Journal subject:
GENETICA MEDICA
Year:
2021
Document type:
Article
Affiliation country:
Reino Unido