Suchergebnisse

Studies of family relations have not kept pace with the acceleration of international migration. To address this gap, this study relied on a survey of 545 Chinese immigrants in Chicago who reported information of 869 older parents to examine the sources of intergenerational conflict in five domains: norms/values, relationship itself, money, health, and parenting. The results of logistic regression showed that maintaining one's traditional culture, in the form of endorsing a sense of filial obligation, was a significant protective factor against all types of conflict. Immigrants with a higher level of acculturation were more likely to report conflict regarding norms/values and relationship itself, but not more so regarding practical issues such as health, money, and parenting. Helping parents with ADLs, not IADLs, was associated with more conflict regarding monetary and health issues. Immigrants' greater sense of mastery was associated with a lower chance of reporting norm/value-related intergenerational conflict.

The recent expansion of human genetics research has raised complex ethical and regulatory issues. However, few published reports describe the views of professionals involved in human subjects protection (HSP) regarding the risks and benefits of genetic research. This anonymous, web-based study elicited the opinions of 208 HSP professionals about review of genetic research. The majority of respondents felt that different guidance is needed for various aspects of genetic protocol review compared with other types of human subjects research. Importantly, opinions were divided on specific genetic research issues, such as what constitutes human subjects research, when to re-consent, and the likelihood and risks of research participant identification. Findings from this study illustrate the need for a collaborative approach to ethics oversight in the review and conduct of genetic research.

<b><i>Background:</i></b> Broad participation in genetic research is needed to promote equitable advances in disease treatment and prevention. <b><i>Objectives:</i></b> The objective of the study was to assess motivations for, and concerns about, genetic research participation. <b><i>Methods:</i></b> The Genetics in Research and Health Care Survey was sent in winter 2017–2018 to 57,331 adult Kaiser Permanente (KP) members from 7 US regions to assess attitudes about genetic testing in health care and research. The survey included an open-ended question on why members would or would not participate in genetic research. Open text responses to this question were coded in the qualitative analysis software Dedoose and analyzed using a thematic analysis approach. Code summaries were organized by major themes, subthemes, and exemplary quotes. <b><i>Results:</i></b> Of the 10,369 participants who completed the survey, 2,645 (25%) provided a comment describing reasons they would or would not participate in research involving genetic testing. Respondents who provided a text comment were 64% female, 49% non-Hispanic (NH) White, 17% Asian/Pacific Islander, 20% Hispanic, and 14% NH Black. The primary themes identified were (1) altruism; (2) decision-making and planning; (3) data use; and (4) data security. These major themes were consistent across each race and ethnic group. <b><i>Conclusions:</i></b> To promote broad participation in genetic research, it is important that recruitment materials address the primary motivators for genetic research participation, including altruism and the potential use of results for personal decision-making. Study materials should also address concerns about possible misuse of genetic information and fears over potential data breaches.

ABSTRACTTranslational research has tended to ignore the question of whether receiving a genomic diagnosis provides utility in community care contexts outside of doctors' offices and hospitals. However, empirical research with parents has highlighted numerous ways that a genomic diagnosis might be of practical value in the care provided by teachers, physical or occupational therapists, speech‐language pathologists, behavior analysts, and nonphysician mental health providers. In this essay, we propose a new conceptual model of genomic utility that offers the opportunity to better capture a broad range of potential implications of genomic technologies for families in various social and organizational systems. We explore crucial research directions to better understand how redefined utility might affect families and nonphysician professionals.