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Future on a Flashdrive: Timely Considerations for the Imminent Adoption of Whole Genome Sequencing in Pediatric Healthcare

In just twenty years, humanity has progressed from the first sequenced human genome to the ability to sequence one in a matter of hours and for only hundreds of dollars. This rise in affordability and speed has enabled physicians to use whole genome sequencing (WGS) as a diagnostic tool, particularly in cases of rare disease in pediatric patients where it has already demonstrated immense potential. However, such a rapid development in technology powerful enough to unlock a person’s genetic information has also led to necessary questions regarding when and how it is applied. In this assessment, we discuss the implications of WGS adoption in pediatric healthcare, focusing specifically on ensuring ethical and equitable collection and communication of genomic data as well as the need for secure and accessible data storage methods. We identify several key areas where further policy is most pressing and provide value-driven recommendations centered on guaranteeing pediatric patient safety, equity, and empowerment during the broader introduction of WGS tools. In particular, we advocate for legal frameworks that limit present usage of WGS to only those patients with a clear and present need, guidelines that expand the labor force that can conduct WGS, increasing access and equity, improved standards for storage, access, and sharing of WGS data, and finally expanding Medicaid coverage to include WGS use in critical care settings.

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Trans and Non-Binary Youth Healthcare in The Digital Age of Medicine

Gender-affirming care has been established as essential healthcare for transgender and non-binary (TNB) youth but many patients face prohibitive barriers when accessing this kind of care. These roadblocks span a wide array of arenas, from digital privacy protections to simply accessing gender affirming care. Many TNB youth lack familial and community support to seek care, geographical access to specialized providers, insurance coverage sufficient to make this care affordable, and legal protections for existing as a TNB person in society. During the COVID-19 pandemic, digital technologies and health legislation expanded patients' access to out-of-state or remote care. Telemedicine in particular has the potential to reduce barriers to accessing gender-affirming care. However, without guidance and oversight in the form of concrete federal or state policies, these benefits may not be extended to those most in need of support. How telehealth providers manage the data collected using these technologies is also of great concern; this health information could be used to prevent and criminalize youth and families seeking care. We thus propose a suite of policy actions to protect and expand access to gender-affirming care for TNB youth: ensuring legal protections for data relating to gender identity and gender-affirming healthcare, establishing nationwide access to gender-affirming care via insurance waivers and support for remote care, and expanding the pool of providers trained in TNB healthcare.

Open Access
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Reducing Digital Discrimination and Stressors by Improving Broadband Adoption in Historically Redlined Areas

Broadband adoption is a determinant of health that intersects with other sociological determinants such as education and employment. Due to the rising reliance on digital technology, lack of broadband adoption prevents individuals from accessing the essential resources needed to fully participate in 21st century educational and employment opportunities. Vulnerable populations experience greater impacts of divestment, and therefore experience greater sociological stressors and worse health outcomes. These communities are left behind with slower services and more expensive internet service plans, as physical proximity to broadband does not necessarily predict broadband adoption. The benefits of broadband adoption and the harms of its absence are magnified for youth and other vulnerable groups, with youth relying more heavily on digital services. The author recommends that the Federal Communications Commission (FCC) Task Force to Prevent Digital Discrimination increase broadband adoption for vulnerable communities by strengthening community-based partnerships to provide culturally competent resources and adopting equity-based national digital health standards that provide greater transparency of data and accountability for discriminatory deployment decisions.

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