The Genetic Discrimination Observatory: confronting novel issues in genetic discrimination.

Genetic discrimination (GD) is the differential or unfair profiling of an individual on the basis of genetic data. This article summarizes the actions of the Genetic Discrimination Observatory (GDO) in addressing GD and recent developments in GD since late 2020. It shows how GD can take many forms in today's rapidly evolving society.

Addressing Privacy Concerns in Sharing Viral Sequences and Minimum Contextual Data in a Public Repository During the COVID-19 Pandemic.

COVID-19 was declared to be a pandemic in March 2020 by the World Health Organization. Timely sharing of viral genomic sequencing data accompanied by a minimal set of contextual data is essential for informing regional, national, and international public health responses. Such contextual data is also necessary for developing, and improving clinical therapies and vaccines, and enhancing the scientific community's understanding of the SARS-CoV-2 virus. The Canadian COVID-19 Genomics Network (CanCOGeN) was launched in April 2020 to coordinate and upscale existing genomics-based COVID-19 research and surveillance efforts. CanCOGeN is performing large-scale sequencing of both the genomes of SARS-CoV-2 virus samples (VirusSeq) and affected Canadians (HostSeq). This paper addresses the privacy concerns associated with sharing the viral sequence data with a pre-defined set of contextual data describing the sample source and case attribute of the sequence data in the Canadian context. Currently, the viral genome sequences are shared by provincial public health laboratories and their healthcare and academic partners, with the Canadian National Microbiology Laboratory and with publicly accessible databases. However, data sharing delays and the provision of incomplete contextual data often occur because publicly releasing such data triggers privacy and data governance concerns. The CanCOGeN Ethics and Governance Expert Working Group thus has investigated several privacy issues cited by CanCOGeN data providers/stewards. This paper addresses these privacy concerns and offers insights primarily in the Canadian context, although similar privacy considerations also exist in other jurisdictions. We maintain that sharing viral sequencing data and its limited associated contextual data in the public domain generally does not pose insurmountable privacy challenges. However, privacy risks associated with reidentification should be actively monitored due to advancements in reidentification methods and the evolving pandemic landscape. We also argue that during a global health emergency such as COVID-19, privacy should not be used as a blanket measure to prevent such genomic data sharing due to the significant benefits it provides towards public health responses and ongoing research activities.

Stem cell 'therapy' advertisements in China: Infodemic, regulations and recommendations.

During the COVID-19 pandemic, in addition to the pandemic itself, a phenomenon called an 'infodemic'-defined by the World Health Organization as the spread of misleading information on the pandemic-has also gained attention. In the field of stem cell research, researchers and regulators have been fighting against false and misleading information, particularly advertisements for unproven and unauthorized stem cell-based interventions for decades. However, how existing legal and regulatory measures, which vary by country, can be employed to combat such false information is unclear. In this article, we examine the situation in China, where the spread of unauthorized stem cell 'therapies' has drawn patients from not only within China but also from abroad. First, we assess how and to what extent online advertisements promote unproven and unauthorized stem cell-based interventions directly to patients and prospective health consumers in China. Next, we survey the landscape for existing regulatory and administrative measures that may be used to combat false and misleading advertisements in this area. Finally, based on our analysis, we provide three main recommendations that may improve the effectiveness and efficiency of the regulatory measures in curtailing illegitimate advertising of unproven and unauthorized stem cell-based interventions in China. In conclusion, we also call for international collaboration among researchers and regulators in studying and strengthening regulations in this critical area that has so far been neglected in scholarly and policy discussions.

Correction to: China: concurring regulation of cross-border genomic data sharing for statist control and individual protection.

The article China: concurring regulation of cross-border genomic data sharing for statist control and individual protection, written by Yongxi Chen and Lingqiao Song, was originally published electronically on the publisher's internet portal (currently SpringerLink) on 16 July 2018 without open access. With the author(s)' decision to opt for Open Choice the copyright of the article changed on 16 August 2018 to

China: concurring regulation of cross-border genomic data sharing for statist control and individual protection.

This paper reviews the major legal instruments and self-regulations that bear heavily on the cross-border sharing of genomic data in China. It first maps out three overlapping frameworks on genomic data and analyzes their underpinning policy goals. Subsequent sections examine the regulatory approaches with respect to five aspects of responsible use and sharing of genomic data, namely, consent, privacy, security, compatible processing, and oversight. It argues that substantial centralised control exerted by the state is, and would probably remain, the dominant feature of genomic data governance in China, though concerns of individual protection are gaining momentum. Rather than revolving around a simplistic antinomy between privacy preservation and open science, the regulatory landscape is mainly shaped by the tension between government desires for national security, state competitiveness, and public health benefits.

Epigenetic Discrimination: Emerging Applications of Epigenetics Pointing to the Limitations of Policies Against Genetic Discrimination.

Over more than two decades, various policies have been adopted worldwide to restrict the use of individual genetic information for non-medical reasons by third parties and prevent 'genetic discrimination'. In this paper, we bring attention to the growing interest for individual epigenetic information by insurers and forensic scientists. We question whether such interest could lead to 'epigenetic discrimination' - the differential adverse treatment or abusive profiling of individuals or groups based on their actual or presumed epigenetic characteristics - and argue that we might already be facing the limitations of recently adopted normative approaches against genetic discrimination. First, we highlight some similarities and differences between genetic and epigenetic modifications, and stress potential challenges to regulating epigenetic discrimination. Second, we argue that most existing normative approaches against genetic discrimination fall short in providing oversight into the field of epigenetics. We conclude with a call for discussion on the issue, and the development of comprehensive and forward-looking preventive strategies against epigenetic discrimination.

Comparative Approaches to Genetic Discrimination: Chasing Shadows?

Genetic discrimination (GD) is one of the most pervasive issues associated with genetic research and its large-scale implementation. An increasing number of countries have adopted public policies to address this issue. Our research presents a worldwide comparative review and typology of these approaches. We conclude with suggestions for public policy development.