Ehitcs

Ethics

Developing solutions to ethical challenges in translational genomics, public health, clinical care, and clinical research

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