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PURPOSE: Direct-to-consumer (DTC) genetic ancestry companies have rapidly increased in popularity, with top testing services maintaining genetic databases of several million consumers. While genetic ancestry tests are often characterized as recreational, companies invoke deeply personal concepts of individual identity, group membership, and kinship when marketing their services. In particular, many companies claim to be able to determine Native American heritage, claims that are not supported by the state of the science and may have significant cultural and political consequences for U.S. tribal communities. This study aims to fill the gaps in empirical work on this issue and characterize how genetic ancestry companies articulate indigenous identity through their marketing strategies. METHODS: We conducted a qualitative content analysis of the public facing websites for 25 DTC genetic ancestry companies that offer services measuring Native American ancestry. RESULTS: Our findings describe how genetic ancestry companies promote a causal relationship between genetics and self-identity through marketing language such as "Discover Yourself" and "Are you Native American?" and how this implicates U.S. tribal communities. CONCLUSION: Genetic ancestry company claims regarding genetic ancestry, personal identity, and cultural membership are problematic and challenge how U.S. tribal nations currently identify and create potential obstacles for tribal sovereignty.

ABSTRACTIn the early days of a pandemic, repurposing biospecimens from established research projects could prove to be extraordinarily useful in achieving substantial and timely public health benefits. Nonetheless, there are potential ethical and regulatory uncertainties that may impede access to those valuable biospecimens. In this article, we argue that there should be a presumption in favor of using previously collected identifiable research biospecimens without reconsent to directly address an infectious disease pandemic, assuming certain conditions are met. This argument fills a unique yet critical gap in decision‐making where the specific consent accompanying the identifiable biospecimens would not otherwise permit repurposing. Further, it suggests that even if gaining reconsent is feasible, doing so in a fast‐moving crisis is not necessary. This analysis also attempts to address the ethical concerns of public health authorities who already may have the power to use such specimens but are reluctant to do so.

There has been heightened legislative attention to medical privacy and to protections from genetic discrimination, without large-scale studies to document privacy concerns or analysis of whether experiences differ by whether the condition is genetic (defined here as a single-gene disorder) or non-genetic. To determine whether experiences regarding privacy, disclosure, and consequences of disclosure differ by whether one's medical condition is genetic, we conducted a descriptive study with one-time, structured quantitative and qualitative interviews. We interviewed approximately 100 adults or parents of children with each of the following medical conditions: sickle cell disease, cystic fibrosis, diabetes, and HIV, and 200 adults with or at risk for breast cancer or colon cancer. The percentages of the total 597 respondents experiencing positive or negative consequences of disclosure and the degree to which experiences differed by whether the condition was genetic were the outcomes of interest. Seventy-four percent were glad and 13% regretted others knew about their condition; these findings did not differ significantly by genetic vs. non-genetic condition. Reports of job and health insurance discrimination were not uncommon for the overall study population (19 and 27%, respectively) but were more likely among those with genetic conditions (30 and 37%, respectively). Legislation and other policymaking should target the needs of persons with all conditions and not focus exclusively on genetic discrimination, given that experiences and concerns generally do not differ based on the genetic etiology of the condition.

While studies reveal that individuals with both genetic and other chronic medical conditions have difficulty obtaining health insurance, no large-scale studies have compared the health insurance experiences of these groups. The goal of this study was to document and compare the health insurance experiences, attitudes, and beliefs of persons with genetic conditions to those of persons with or at risk for other serious medical conditions. We interviewed approximately 100 adults or parents of children with one of each of the following medical conditions: sickle cell disease (SCD), cystic fibrosis (CF), diabetes, and HIV, and 200 adults with or at risk for breast (BC) or colon cancer (CC). The interview included items related to respondents' experiences and attitudes regarding health insurance. Twenty-seven percent of 597 total respondents self-reported having been denied health insurance or offered insurance at a prohibitive rate. Respondents with single-gene disorders (CF and SCD) were twice as likely to report this as those with non-genetic conditions. Legislation that exists to limit genetic discrimination in insurance addresses genetic risks or traits only, however, rather than protecting those with actual disease. Thus, current legislation may not address the challenges faced by individuals like those in this study, who try to maintain access to health insurance when they or their children are symptomatic with a genetic or other serious health condition. More than one-third of all respondents thought there was a high chance they would be denied health insurance in the future or their insurance would become unaffordable. That individuals with all six health conditions expressed concern regarding their ability to obtain future health insurance suggests policy proposals should be broad-based, addressing the needs and concerns of individuals with diverse health conditions.