Participant Satisfaction With a Preference-Setting Tool for the Return of Individual Research Results in Pediatric Genomic Research
| Autor: | Sarah K. Savage, Kurt D. Christensen, Sonja I. Ziniel, Robert C. Green, Phoebe L. Bacon, Elissa R. Weitzman, Ingrid A. Holm, Noelle Huntington, Brittany R. Iles |
|---|---|
| Rok vydání: | 2015 |
| Předmět: |
Adult
Male Parents Genetic Research medicine.medical_specialty Biomedical Research Social Psychology Research Subjects Genomic research MEDLINE Disclosure Personal Satisfaction Pediatrics Article Education Patient satisfaction Surveys and Questionnaires parasitic diseases medicine Humans Psychiatry Biological Specimen Banks Genome business.industry Communication Genomics Middle Aged Mental illness medicine.disease Biobank Preference Patient Satisfaction population characteristics Female business |
| Zdroj: | Journal of Empirical Research on Human Research Ethics. 10:414-426 |
| ISSN: | 1556-2654 1556-2646 |
| Popis: | The perceived benefit of return of individual research results (IRRs) in accordance to participants’ preferences in genomic biobank research is unclear. We developed an online preference-setting tool for return of IRRs based on the preventability and severity of a condition, which included an opt-out option for IRRs for mental illness, developmental disorders, childhood-onset degenerative conditions, and adult-onset conditions. Parents of patients |
| Databáze: | OpenAIRE |
| Externí odkaz: |
|