Extensive efforts have been aimed at understanding the genetic underpinnings of complex diseases that affect humans. Numerous genome-wide association studies have assessed the association of genes with human disease; including the Framingham Heart Study (FHS), which genotyped 550,000 SNPs in 9,000 participants. The success of such efforts requires high rates of consent by participants, which is dependent on ethical oversight, communications, and trust between research participants and investigators. To study this we calculated percentages of participants who consented to collection of DNA and to various uses of their genetic information in two FHS cohorts between 2002 and 2009. The data included rates of consent for providing a DNA sample, creating an immortalized cell line, conducting research on various genetic conditions including those that might be considered sensitive, and for notifying participants of clinically significant genetic findings were above 95%. Only with regard to granting permission to share DNA or genetic findings with for-profit companies was the consent rate below 95%. We concluded that the FHS has maintained high rates of retention and consent for genetic research that has provided the scientific freedom to establish collaborations and address a broad range of research questions. We speculate that our high rates of consent have been achieved by establishing frequent and open communications with participants that highlight extensive oversight procedures. Our approach to maintaining high consent rates via ethical oversight of genetic research and communication with study participants is summarized in this report and should be of help to other studies engaged in similar types of research.

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Financial and educational barriers significantly impact low socioeconomic status racial and ethnic minority groups in their pursuit of health care, though less is known about the interplay of these factors in the pursuit of surgical care. This study was designed to uncover the challenges to patient understanding and compliance with pre- and postsurgical clinical advice in low-income urban environments. The data for this study were collected in spoken survey with eighty patients in 9 surgery clinics at Temple University Hospital in Philadelphia. Survey responses were coded into various groups until categories emerged. Relationships among categories were identified to generate themes and subthemes. Key facilitators of patient understanding and compliance were physician likeability and communication. Eighty (100%) patients reported that the physician always treated them with respect, which was important in their interpretation of their experience with the physician. Eighteen (23%) patients identified a language other than English as their primary language and 57 (71%) patients completed high school or less schooling, which likely influenced their communication with the physician. Eighty (100%) patients expressed that the physician always explained things in a way they could understand, focusing on clarity and thoroughness. Challenges to patient understanding and compliance were finances and social resources. Patients noted difficulty paying for medical care and a lack of support at home. Agency could facilitate use of surgical care while a lack thereof could challenge motivation. Ultimately, these themes showed how patients in this environment interact with surgical care.

Calls to abolish race as a proxy for biology or genetics in clinical care have reached a fever pitch in the latter half of 2020, including articles in the New England Journal of Medicine, and urgent letters from prominent Senators.