Ethics

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