Moving Genomics into the Clinic: Platforms for Implementing Clinical Genomic Data-Sharing in Ways That Address Ethical, Legal and Social Implications.

This section explores the challenges involved in translating genomic research into genomic medicine. A number of priorities have been identified in the Australian National Health Genomics Framework for addressing these challenges. Responsible collection, storage, use and management of genomic data is one of these priorities, and is the primary theme of this section.

Future-proofing genomic data and consent management: a comprehensive review of technology innovations.

Genomic information is increasingly used to inform medical treatments and manage future disease risks. However, any personal and societal gains must be carefully balanced against the risk to individuals contributing their genomic data. Expanding our understanding of actionable genomic insights requires researchers to access large global datasets to capture the complexity of genomic contribution to diseases.

Nonbinary gender identities.

A description of the meaning and terminology as well as population estimates of nonbinary gender identities is given. Respectful use of language, names and pronouns of people who identify as nonbinary is discussed. The chapter further includes the need for access to gender-affirming care and barriers to care; gender-affirming medical treatment interventions, including hormone treatment, speech and language therapy, hair removal and surgeries for bodies assigned female at birth (AFAB) and for bodies assigned male at birth (AMAB); and the importance of fertility preservation for this specific patient population.

'I Didn't Have the Language Then'-A Qualitative Examination of Terminology in the Development of Non-Binary Identities.

Introduction: Identities that lie outside of exclusively male and female, such as non-binary and genderqueer, have become increasingly more prevalent and visible within recent years. However, to date, the role of terminology in the development of such gender identities has been under-researched. This study aims to: (1) Examine what role terminology plays in coming to identify as non-binary.

Australian Genomics: Outcomes of a 5-year national program to accelerate the integration of genomics in healthcare.

Australian Genomics is a national collaborative partnership of more than 100 organizations piloting a whole-of-system approach to integrating genomics into healthcare, based on federation principles. In the first five years of operation, Australian Genomics has evaluated the outcomes of genomic testing in more than 5,200 individuals across 19 rare disease and cancer flagship studies. Comprehensive analyses of the health economic, policy, ethical, legal, implementation and workforce implications of incorporating genomics in the Australian context have informed evidence-based change in policy and practice, resulting in national government funding and equity of access for a range of genomic tests.