RTI Center for Newborn Screening, Ethics, and Disability investigators use robust approaches and methods to understand, measure, and develop interventions to address the ethical challenges in a wide range of contexts, including returning genomic information, clinical trials, newborn screening, and clinical and research communication. We demonstrate innovation in:
Clinical interactions and clinical bioethics
- Genetic counseling expertise and experience
- International leadership in genetic counseling
- Psychotherapeutic counseling
- Shared decision making
- Disability interventions
- Use of genomic sequencing results
- Secondary findings
- Communication of uncertainty
- Risk perception and risk communication
- Psychiatric genetics
Newborn screening
- Screening program development
- International leadership
- Development and validation of novel assays
- Return of results such as telegenetic counseling
- Early identification to enroll in clinical trials or undergo novel treatments
Social/behavioral research methodology
- Theoretical science in health behavior and decision-making
- Application of discrete choice and best-worst scaling
- Development of scales and their validation
- Use of interviews and focus groups
- Mixed methods
Stakeholder engagement
- Expertise in multi-stakeholder engagement
- Training in stakeholder engagement
- Research and collaboration in program development
Patient preferences
- Collection and use of preference data
- Methods development
- Engagement with industry and regulators
- Patient-focused drug development in rare disease
Informed choice
- Developing tools to enhance informed choice
- Clinical trial and other research participation
- To learn results from genomic sequencing
- Electronic consent and other adaptive consent approaches
