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Sharing sequencing data sets without identifiers has become a common practice in genomics. Here, we report that surnames can be recovered from personal genomes by profiling short tandem repeats on the Y chromosome (Y-STRs) and querying recreational genetic genealogy databases. We show that a combination of a surname with other types of metadata, such as age and state, can be used to triangulate the identity of the target. A key feature of this technique is that it entirely relies on free, publicly accessible Internet resources. We quantitatively analyze the probability of identification for U.S. males. We further demonstrate the feasibility of this technique by tracing back with high probability the identities of multiple participants in public sequencing projects.

On April 24, 2018, a suspect in California's notorious Golden State Killer cases was arrested after decades of eluding the police. Using a novel forensic approach, investigators identified the suspect by first identifying his relatives using a free, online genetic database populated by individuals researching their family trees. In the wake of the case, media outlets reported privacy concerns with police access to personal genetic data generated by or shared with genealogy services. Recent data from 1,587 survey respondents, however, provide preliminary reason to question whether such concerns have been overstated. Still, limitations on police access to genetic genealogy databases in particular may be desirable for reasons other than current public demand for them.

The police can access your online family-tree research—and use it to investigate your relatives The 24 April 2018 arrest of Joseph James DeAngelo as the alleged Golden State Killer, suspected of more than a dozen murders and 50 rapes in California, has raised serious societal questions related to personal privacy. The break in the case came when investigators compared DNA recovered from victims and crime scenes to other DNA profiles searchable in a free genealogical database called GEDmatch. This presents a different situation from the analysis of DNA of individuals arrested or convicted of certain crimes, which has been collected in the U.S. National DNA Index System (NDIS) for forensic purposes since 1989. The search of a nonforensic database for law enforcement purposes has caught public attention, with many wondering how common such searches are, whether they are legal, and what consumers can do to protect themselves and their families from prying police eyes. Investigators are already rushing to make similar searches of GEDmatch in other cases, making ethical and legal inquiry into such use urgent.

Microbial ecologists, realizing that >99% of environmental microbes could not be easily cultured, developed approaches to study microorganisms in situ [5], primarily by sequencing the 16S ribosomal RNA gene (16S) as a phylogenetic and taxonomic marker to identify members of microbial communities [6]. The HMP has thus greatly advanced our knowledge of the microbes in a healthy adult reference population, and provided much-needed infrastructure in terms of reference genomes, laboratory protocols, computational methods, and ELSI considerations [1],[2] to help enable a vast range of studies that will likely find associations between human-associated microbial communities and disease.

Has the Genetic Information Nondiscrimination Act succeeded in its twin missions of preventing discrimination and alleviating public fears about the potential for discrimination on the basis of genetic test results? That's a difficult question to answer. In 2008, after 13 years of advocacy by the genetics community and U.S. lawmakers, the Genetic Information Nondiscrimination Act (GINA) was signed into law. GINA is the first U.S. federal antidiscrimination statute crafted to address an area where there was no well-documented history of widespread discrimination and no stigmatized group to protect. The statute's language is unusual, proposing not only “to fully protect the public from discrimination” but also to “allay their concerns about the potential for discrimination, thereby allowing individuals to take advantage of genetic testing, technologies, research and new therapies.” GINA was initially lauded as a huge legislative . . .

In clinical exome and genome sequencing, there is a potential for the recognition and reporting of incidental or secondary findings unrelated to the indication for ordering the sequencing but of medical value for patient care. The American College of Medical Genetics and Genomics (ACMG) recently published a policy statement on clinical sequencing that emphasized the importance of alerting the patient to the possibility of such results in pretest patient discussions, clinical testing, and reporting of results. The ACMG appointed a Working Group on Incidental Findings in Clinical Exome and Genome Sequencing to make recommendations about responsible management of incidental findings when patients undergo exome or genome sequencing. This Working Group conducted a year-long consensus process, including an open forum at the 2012 Annual Meeting and review by outside experts, and produced recommendations that have been approved by the ACMG Board. Specific and detailed recommendations, and the background and rationale for these recommendations, are described herein. The ACMG recommends that laboratories performing clinical sequencing seek and report mutations of the specified classes or types in the genes listed here. This evaluation and reporting should be performed for all clinical germline (constitutional) exome and genome sequencing, including the “normal” of tumor-normal subtractive analyses in all subjects, irrespective of age but excluding fetal samples. We recognize that there are insufficient data on penetrance and clinical utility to fully support these recommendations, and we encourage the creation of an ongoing process for updating these recommendations at least annually as further data are collected. Genet Med 2013:15(7):565–574

New research models may benefit from policy modifications Citizen science initiatives that support collaborations between researchers and the public are flourishing. As a result of this enhanced role of the public, citizen science demonstrates more diversity and flexibility than traditional science and can encompass efforts that have no institutional affiliation, are funded entirely by participants, or continuously or suddenly change their scientific aims. But these structural differences have regulatory implications that could undermine the integrity, safety, or participatory goals of particular citizen science projects. Thus far, citizen science appears to be addressing regulatory gaps and mismatches through voluntary actions of thoughtful and well-intentioned practitioners. But as citizen science continues to surge in popularity and increasingly engage divergent interests, vulnerable populations, and sensitive data, it is important to consider the long-term effectiveness of these private actions and whether public policies should be adjusted to complement or improve on them. Here, we focus on three policy domains that are relevant to most citizen science projects: intellectual property (IP), scientific integrity, and participant protections.

Prospects have never seemed better for a truly global approach to science to improve human health, with leaders of national initiatives laying out their vision of a worldwide network of related projects. An extensive literature addresses obstacles to global genomic data sharing, yet a series of public polls suggests that the scientific community may be overlooking a significant barrier: potential public resistance to data sharing across national borders. In several large United States surveys, university researchers in other countries were deemed the least acceptable group of data users, and a just-completed US survey found a marked increase in privacy and security concerns related to data access by non-US researchers. Furthermore, diminished support for sharing beyond national borders is not unique to the US, although the limited data from outside the US suggest variation across countries as well as demographic groups. Possible sources of resistance include apprehension about privacy and security protections. Strategies for building public support include making the affirmative case for global data sharing, addressing privacy, security, and other legitimate concerns, and investigating public concerns in greater depth.

Research into psychedelics’ clinical potential has corresponded to a growth in public interest and adult use. One common pathway to accessing psychedelics is through psychedelic retreats. While individual retreats have been characterized in the anthropological literature, no systematic evaluation of the psychedelic retreat industry exists. Assessing the characteristics of the psychedelic retreat industry is critical to understanding the associated ethical, legal, and social implications and ensuring consumer safety. To this end, we conducted a landscape analysis of online, publicly available information to capture and characterize a broad range of organizations offering psychedelic retreats and marketing to English-speaking consumers. From July 2023 to December 2023, we identified 298 psychedelic retreat organizations. Some identified as religious organizations, but the majority focused on general wellness. Organizations offered various psychedelic substances with ayahuasca being the most common, followed by psilocybin and San Pedro. Organizations held retreats across the globe at various price points. In total, there were 440 distinct physical locations where retreat experiences were held; 130 were inside the United States (U.S.) and 310 were outside the U.S. Further research into the practices of psychedelic retreat organizations is recommended to help reduce harm and support consumer education.