RESUMO
High profile data breaches and the proliferation of self-tracking technologies generating bio-feedback data have raised concerns about data privacy and data sharing practices among users of these devices. However, our understanding of how self-trackers in sexual health populations, where the data may be sensitive, personal, and stigmatising, perceive data privacy and sharing is limited. This study combined industry consultation with a survey of users of the world's first biofeedback smart vibrator, the Lioness, that enables users to monitor and analyse their sexual response intensity and orgasm duration over time. We found users of the Lioness are motivated to self-track by both individual and altruistic goals: to learn more about their bodies, and to contribute to research that leads to better sexual health outcomes. Perceptions of data privacy and data sharing were shaped by an eagerness to collaborate with sexual health researchers to challenge traditional male-centric perspectives in biomedical research on women's sexual health, where gender plays a crucial role in defining healthcare systems and outcomes. This study extends our understanding of the non-digital aspects of self-tracking by emphasising the role of gender and inclusive healthcare advocacy in shaping perceptions of data privacy and sharing within sexual health populations.
RESUMO
CONCLUSIONS: The D antigen is highly immunogenic and may cause alloimmunization to occur after blood transfusion or pregnancy. Some RHD variant alleles express a D antigen that is missing one or more epitopes, thus putting a presumed D+ patient at risk for alloanti-D and hemolytic disease of the fetus and newborn. It is generally accepted that individuals who have a serologic weak D phenotype due to one of three alleles common in Caucasians, RHD*weak D types 1, 2, or 3, are not at risk for alloimmunization. In this study, blood samples from 46 obstetrics patients from a local health system were identified based on discrepant results between automated gel and manual tube testing (n = 20) or based on presentation with a serologic weak D phenotype (n = 26). RHD genotyping was performed using commercial and laboratory-developed tests. Of the 26 serologic weak D samples, 18 (69.2%) were found to carry alleles RHD*weak D type 1, 2, or 3. The remaining eight samples (30.8%) were found to carry partial D alleles. Of the 20 samples submitted because of D typing discrepancy, 7 (35%) carried alleles RHD*weak D type 1, 2, or 3, while 13 (65%) carried partial RHD alleles. This report summarizes the findings of one hospital system and its approach to integrating RHD genotyping into its assessment of risk of alloimmunization in obstetrics patients. It demonstrates that individuals with partial RHD alleles can present with serologic weak D phenotype, such that, without RHD genotyping, these individuals may not be identified as candidates for Rh immune globulin. The study also demonstrates that use of two methods (automated gel and tube testing) allows for identification of partial D cases that would otherwise be missed. I.
