Childbearing, Reproductive Control, Aging Women, and Health Care: The Projected Ethical Debates

Of the many social trends that will have an impact on the ethical debates surrounding women's health in the 21st century, three are discussed the shifting demographics of age and race in the United States; the fundamental change in the health care system to a community-based, preventive model; and the equal voice of women in the government. Using these trends as a framework, this article hypothesizes the ethical debates that will occur in the 21st century concerning such issues as fetal viability, abortion, contraception, infertility, genetic engineering, aggressive versus nonaggressive treatment of aging women, scarce resources, menopause, organ transplants, sexism in biomedical research, fertility in postmenopausal women, birthing centers, fetal surgery, and fetal therapy.     

Using social media listening to understand barriers to genomic medicine for those living with Ehlers–Danlos syndromes and hypermobility spectrum disorders

Introduction

Technological improvements alone have not led to the integration of genomic medicine across a broad range of diseases and populations. For genomic medicine to be successfully implemented across specialties and conditions, the challenges patients and caregivers experience need to be identified using a multi-faceted understanding of the context in which these obstacles occur and how they are experienced. Individuals affected by rare conditions, like Ehlers–Danlos syndromes (EDS) and hypermobility spectrum disorders (HSD), express numerous challenges with accessing genomic medicine. Many patients living with rare diseases seek information and find comfort in online health communities.

Methods

Social media conversations facilitated through online health communities are windows into patients' and caregivers' authentic experiences. To date, no other study has examined genomic medicine barriers by analysing the content of social media posts, yet the novel methodological approach of social media listening permits the analysis of virtual, organic conversations about lived experiences.

Results/Conclusions

Using a modified social–ecological model, this study found that social–structural and interpersonal barriers most frequently impede access to genomic medicine for patients and caregivers living with EDS and HSD.

Patient or Public Contribution

Data were retrieved through social media conversations facilitated through publicly accessible health communities through Inspire, an online health community. Social media listening permits the analysis of virtual, organic conversations about lived experiences.