Family Disclosure Research Articles

Disclosure dilemma: Revealing biological paternity to family and others after unexpected direct‐to‐consumer genetic results

AbstractObjectiveThis study explores the experiences of direct‐to‐consumer (DTC) genetic test results of recipients who learn of unexpected biological paternity, not parent expected (NPE). We characterize the process of disclosing NPE discoveries, as well as the benefits and the repercussions of such disclosures on individuals, families, and others.BackgroundThe popularity of DTC genetic testing is increasing. Consequently, many discover unexpected information about their ancestry, heritage, and paternity.MethodsThis qualitative study used an inductive thematic analysis of in‐depth interviews with adults (n = 27; aged 40–70) who received DTC genetic test results revealing unexpected biological paternity.ResultsThe NPE disclosure dilemma encompasses uncertainty about narrating their discovery; gauging the dispositions of others; wondering what repercussions may arise; and managing feelings about stigma, betrayal, and anger. Culture, history, and family dynamics are vital in navigating disclosures. A desire to understand their origins, connect with new genetic families, and validate their sense of self is essential. Biological connections of kinship remain important arbiters of relatedness for many individuals.ConclusionDisclosure of NPE discoveries differs from other stigmatized identities because the secret belongs to someone else; thus, self‐disclosure affects the entire family system.ImplicationsDrawing on family systems theory and disclosure processes model, our findings provide insights into the intricate dynamics inherent in NPE disclosure.

Attitudes towards disclosure of familial genetic risk in a Mediterranean island population – A survey of the Maltese population

Germline genetic testing has implications that extend beyond the individual patient to relatives, particularly for high-penetrance variants implicated in hereditary cancer or neurodegenerative syndromes. Many countries encourage patient-led communication to inform at-risk relatives, although the efficacy and uptake of this approach varies. Alternative scenarios envisage direct contact mediated by clinicians. The familial disclosure of sensitive genetic information is also determined by complex socio-ethnic factors. To date, no study has explored whether relatives would want to be informed of familial genetic risk and their preferences on different methods of communication in Malta. We thus used a published instrument that utilizes hypothetical scenario methodology to survey the attitudes of the Maltese population (n = 334) to receiving genetic information from family members. Two vignettes on Huntington's disease and colorectal cancer were presented. We also explored preferences towards the communication of genetic risk, confidentiality, and disclosure policies. Our preliminary results show that most respondents want to be informed of their increased risk by a family member or a clinician and would opt to receive confirmatory genetic testing. Most respondents preferred being informed of genetic risk by a close relative, but in the case of non-disclosure would want to be informed by a clinician. Most respondents expressed preference in favour of the introduction of registries, legislative change and sharing of contact details to address cases of nondisclosure. Our findings contribute further to evidence that supports, in selected hypothetical scenarios, an envisioned change in disclosure of genetic data policy by the public that is different from current practice to date.

Book Review: Queersapien by Sharif D. Rangnekar

Queersapien by Sharif D. Rangnekar is an intimate exploration into the multifaceted journey of a queer person, encapsulating the myriad instances of “coming out” that extend beyond the conventional narrative. In this poignant narrative, Rangnekar delves into the complexities of self-discovery, family disclosure, and the broader societal acceptance that marks the queer experience. The book skillfully navigates through the non-linear nature of the coming-out process, shedding light on the constant evaluation of risks and the perpetual quest for safe spaces in a world that does not always embrace queerness.

Familial disclosure of mutational status and cascade testing: Relationships with cancer-predisposing genes and race/ethnicity.

10605 Background: Patients (pts) with cancer-predisposing genes may differ in the patterns of genetic testing disclosure to family members and cascade testing. We examined the relationships between varying levels of cancer-predisposing gene penetrance and racial/ethnic differences in familial disclosure and cascade testing. Methods: Between July-September 2023, we conducted a follow-up survey of pts enrolled in the University of Chicago Cancer Prone Study, a longitudinal cohort of high-risk families initiated in 1992. Pts were asked questions about familial disclosure and cascade testing, including whether they 1) carry a gene mutation(s); 2) told any family member about their mutation status; 3) received a family letter from their genetic counselors after testing; and 4) had any family member having undergone testing for the familial mutation(s). Chi-squared or Fisher’s exact tests were performed. Results: Of 912 respondents, 35.3% (n=312) reported carrying a genetic mutation. The mean age was 54.8 years (SD=13.7); 86.9% were White, followed by 4.8% Black, 5.1% Hispanic, and 3.2% other/multiracial; 45.8% had a graduate/professional degree; 31.5% had an annual household income of ≥$200,000; 70.9% and 23.9% were privately insured and on Medicare/Medicaid, respectively. Among pts with a genetic mutation, 37.8% had a BRCA1 (n=63) or BRCA2 (n=55) mutation. The vast majority (96.5%) disclosed their mutation status to a family member. The disclosure status differed significantly by race/ethnicity (Hispanic 100.0%, White 98.5%, Black 92.3%, vs. other/multiracial 80.0%; p=0.013). First-degree relatives were the most communicated to, and the most cited reasons for disclosure were “awareness of potential risk” (n=264) and “support preventive measures” (n=224). Among pts carrying a gene mutation, 50.6% (n=158) reported having received a letter from their genetic counselors to share with any family member and of these, 82.2% (n=129) did share their family letters. Among pts who did not receive or did not know if they received a letter (n=149), 41.6% stated that the letter would have helped them disclose the information to their family members. Further, 79.1% of the pts reported that their family members underwent genetic testing, with no significant differences in cascade testing by race/ethnicity and other demographic characteristics. However, pts with a positive mutation in BRCA1or BRCA2 (92.6%) were more likely to have a cascade testing, when compared to pts with other mutations (76.8%; p<0.001). Conclusions: Although familial disclosure of mutational status was high, cascade testing was not high enough and it depends on the penetrance of cancer-predisposing genes. Understanding genetic testing disclosure and cascade testing from a gene-to-gene basis could help improve genetic counseling and risk communication particularly for racial/ethnic minority pts.

Abstract PO4-09-08: Perceptions and Experiences of Black Women on Family History Sharing and Genetic Testing for Hereditary Breast and Ovarian Cancer

Abstract Black women experience significant disparities in morbidity and mortality related to hereditary breast and ovarian cancer (HBOC). Early identification of women with HBOC is essential for proactive screening and timely diagnosis. However, evidence suggests that Black women receive genetic testing for HBOC at lower rates than their White counterparts. We conducted in-depth qualitative interviews with 107 Black women with a personal or family history of breast or ovarian cancer, to understand their perceptions of their familial risk of HBOC and interest in genetic testing. In phase 1 of this study, participants were recruited from the networks of patient support organizations and historically Black sororities representing mostly highly educated and well insured patients. In phase 2, participants were recruited from a family medicine safety net clinic in Jacksonville, FL for socioeconomic diversity. Participants in both cohorts frequently expressed a lack of awareness about their family cancer history and identified many barriers to family disclosure of a cancer diagnosis. These include a culture of silence around medical issues and a belief that personal difficulties should be kept to oneself. Practical and cultural barriers to family history sharing were magnified among those with lower socioeconomic status. Many participants in both cohorts indicated a strong desire to understand their own risk of HBOC. They also expressed interested in genetic testing to proactively mitigate risk to themselves and future generations. Understanding of the potential relevance of HBOC testing to one’s personal health and post-test actionability was variable across both groups, although perceptions of genetic testing were generally favorable. These findings suggest that culturally tailored educational materials and alternative clinical modalities to collect family health history may be beneficial to improve timely identification of Black women who meet NCCN Guidelines for HBOC testing. Specifically, greater attention should be given to addressing barriers that led to underestimation of HBOC risk among patients experiencing disparities driven by adverse social determinants of health. Citation Format: Kirsten Riggan, Jane Yap, Ewan Cobran, Michele Halyard, Sarah James, Marion Kelly, Daphne Phillips, Megan Allyse. Perceptions and Experiences of Black Women on Family History Sharing and Genetic Testing for Hereditary Breast and Ovarian Cancer [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO4-09-08.

Clinician perspectives on policy approaches to genetic risk disclosure in families

Genomic sequencing has emerged as a powerful tool with significant implications for patients and their relatives, however, empirical evidence suggests that effective dissemination of risk information within families remains a challenge. Policy responses to address this issue vary across countries, with Belgium notably lacking specific regulations governing nondisclosure of genetic risk. In this study, we conducted semi-structured interviews with clinicians from Belgian clinical genetics centers to gain insight into their perspectives on policy approaches to the disclosure of genetic risk within families. Using real-world examples of legislation and court rulings from France, Australia, and the UK, we explored clinician viewpoints on the roles and responsibilities of both patients and clinicians in the family communication process. Clinicians expressed confusion regarding what was legally permissible regarding contacting at-risk relatives. While there was a consensus among participants that patients have a responsibility to inform their at-risk relatives, participants were hesitant to support the legal enforcement of this duty. Clinicians mostly recognized some responsibility to at-risk relatives, but the extent of this responsibility was a subject of division. Our findings highlight the need for a comprehensive policy that clarifies the roles and responsibilities of clinicians and patients to inform at-risk relatives. Furthermore, the study underscores the practical challenges clinicians face in supporting patients through the complex process of family communication, suggesting a need for additional resources and the exploration of alternative approaches to communication.

The experience of receiving a letter from a cancer genetics clinic about risk for hereditary cancer

Direct contact may be an option for supporting disclosure in families with hereditary cancer risk. In this qualitative interview study, we explored how healthy at-risk relatives experience receiving a letter with information about hereditary cancer directly from healthcare rather than via a relative. The study is part of an ongoing multicentre randomised clinical trial in Sweden that evaluates the effectiveness of direct letters from cancer genetics clinics to at-risk relatives. After conducting semi-structured interviews with 14 relatives who had received a letter and contacted the clinic, we analysed the data using thematic analysis. The relatives had different levels of prior knowledge about the hereditary cancer assessment. Many had been notified by family that a letter was coming but some had not. Overall, these participants believed healthcare-mediated disclosure could complement family-mediated disclosure. They expressed that the letter and the message raised concerns and a need for counselling, and they wanted healthcare to be accessible and informed when making contact. The participants found the message easier to cope with when they had been notified by a family member beforehand, with a general attitude that notifying relatives was the appropriate step to take. They thought healthcare should help patients with the disclosure process but also guard the right of at-risk relatives to be informed. The findings support a direct approach from healthcare as a possible complement to an established model of family-mediated risk disclosure, but implementation must be made within existing frameworks of good practice for genetic counselling.

Do people with hereditary cancer syndromes inform their at-risk relatives? A systematic review and meta-analysis.

To evaluate rates of familial disclosure of hereditary cancer syndrome information. A systematic review and meta-analysis was conducted in accordance with PRISMA guidelines (PROSPERO no.: CRD42020134276). Key electronic databases were searched to identify studies evaluating hereditary cancer syndrome cascade relative disclosure. Eligible studies were subjected to meta-analysis. Thirty-four studies met inclusion criteria. Among 11,711 included relatives, 70% (95% CI 60 - 78%) were informed of their risk of carrying a cancer-associated pathogenic variant; of 2,875 relatives informed of their risk who were evaluated for uptake of cascade testing, 43% (95% CI 27 - 61%) completed testing. Rates of disclosure were higher among female vs male relatives (79% [95% CI 73% - 84%] vs 67% [95% CI 57% - 75%]) and first-degree vs second-degree relatives (83% [95% CI 77% - 88%] vs 58% [95% CI 45 - 69%]). Nearly one-third of at-risk relatives remain uninformed of their risk of carrying a cancer-associated pathogenic variant. Even among those informed, fewer than half subsequently complete genetic testing, representing a critical missed opportunity for precision cancer prevention. Five studies evaluating interventions to improve disclosure rates were generally ineffective. Urgent work is needed to elucidate barriers to relative disclosure by probands to develop targeted interventions that can optimize proband-mediated cascade genetic testing rates.

Family influences on oral PrEP use among adolescent girls and young women in Kenya and South Africa.

Effective use of oral HIV pre-exposure prophylaxis (PrEP) has been lower among African adolescent girls and young women (AGYW) than among older women, young men who have sex with men, and serodiscordant heterosexual couples in the region. Efforts to build PrEP support have centered around peers and male partners, but the family may also play an important role. This qualitative study aimed to describe family influence on PrEP use among AGYW in in three African cities. POWER (Prevention Options for Women Evaluation Research) was a PrEP demonstration project among 2550 AGYW (16-25 years old) in Johannesburg and Cape Town, South Africa and Kisumu, Kenya conducted from 2017 to 2020. In-depth interviews and focus group discussions were conducted with 136 AGYW participants to explore their PrEP views and experiences, including awareness and interest in PrEP; barriers and facilitators to uptake and use; the influence of family, peers, intimate partners, and community; and the key types of support for their PrEP use. Transcripts were coded and analysed thematically. The decision to initiate PrEP was associated with fear and anxiety linked to anticipated stigma from family members, and with family's lived HIV experience. Family disclosure, especially to mothers, was important to participants, as most lived with their families and considered it essential for them to obtain their mother's approval to use PrEP. Most family members, particularly mothers, provided instrumental, emotional, informational and appraisal support to participants using PrEP, including reminders, encouragement, and problem-solving. Participants reported that family members with insufficient information about PrEP safety and efficacy and who voiced concerns were a substantial barrier to their use. However, they often became supportive after receiving more PrEP information. Families, particularly mothers, can play an important role in supporting PrEP use. PrEP programmes should leverage family support to help with PrEP persistence by providing basic information to families about PrEP safety and efficacy. AGYW using PrEP should be encouraged to selectively disclose PrEP use to build support and counseled on how to disclose and address family concerns.

The Media Coverage of Bruce Willis Reveals Unfamiliarity With Frontotemporal Degeneration.

In 2022, Bruce Willis' family released a statement saying that he had been diagnosed with aphasia (an acquired language impairment) and would no longer be acting. Ten months later, the Willis family released another statement indicating that he received a more specific diagnosis of frontotemporal degeneration (FTD). This resulted in an explosion of media coverage, as prominent news outlets scrambled to produce stories describing FTD to a public largely unfamiliar with the disease. The quality of these stories varied widely, and in many cases the relationship between aphasia and FTD was misrepresented, as were basic descriptions and facts about FTD. FTD refers to a class of protein-misfolding diseases that are a common cause of aphasias due to neurodegeneration, or primary progressive aphasias (PPA). Rather than describing how FTD was discovered to be the underlying source of Mr. Willis' aphasia, many reports described his aphasia as "progressing into" FTD, implying they are two different disorders. Furthermore, these reports used the terminology of frontotemporal "dementia" rather than "degeneration", a term that invokes many stereotypes in the public imagination and may have contributed to misrepresentations in coverage. Instead of focusing on the language symptoms of PPA, reports often emphasized the personality and behavioral changes more closely associated with other variants of FTD. The substance of various facts, such as how common FTD is and how it can be treated, varied widely across reports. In sum, the media coverage of Mr. Willis' diagnosis reveals the extent to which the media and general public are uninformed about FTD and PPA. The remedy for this problem is to promote greater awareness of FTD, in both the public and the medical provider class. The Willis family's disclosure was a courageous act that helped bring much-needed attention to this disease.

Video Author and Family Disclosure Index

Video Author and Family Disclosure Index

Family violence screening and disclosure response: a public mental health service consumer survey

Background: Family violence (FV) is a significant problem that has a bidirectional link with mental health functioning. This research aimed to investigate family violence screening and response practices in a Victorian public adult mental health service, NorthWestern Mental Health, from the consumer perspective. Methods: A prospective, cross-sectional, electronic consumer survey was created, utilising the Royal Melbourne Hospital Patient Survey FV screening and response tool. Data were collected over a two-month time period, via iPad. Clinicians invited all consumers (age range 18 to 64 years) attending the service to participate on data collection days, unless any of the exclusion criteria were present: a) clinical interaction occurring in a non-confidential environment; b) acute distress/crisis; c) clinician concerns about affecting rapport; and d) cognitive impairment, known disability or diminished capacity preventing them from reading or understanding the survey questions. Categorical and Likert type survey responses were explored descriptively. All variables collected in the survey were provided, specifically the percentage of responses in each category for each question. Free-text responses were analysed using qualitative description of the text-box response content. Results: 35 consumers participated. 47% reported being screened for at least one family violence issue on at least one occasion. 26% reported disclosing FV concerns. All those disclosing felt mildly or very supported by the clinician’s response, and two-thirds received assistance they found helpful. 9% reported wanting to disclose FV concerns but not feeling comfortable to do so. Consumers indicated that FV should be spoken about more, that receiving assistance is helpful, but that responses varied in quality depending on the discipline of the clinician. Conclusion: FV screening rates were found to be suboptimal as unmet needs were identified. Further training and services changes are required to improve screening rates, increase client comfort to disclosure, and optimise the clinical response to disclosures.

Family violence screening and disclosure response: A public mental health service consumer survey.

Background: Family violence (FV) is a significant problem that has a bidirectional link with mental health functioning. This research aimed to investigate family violence screening and response practices in a Victorian public adult mental health service, NorthWestern Mental Health, from the consumer perspective. Methods: A prospective, cross-sectional, electronic consumer survey was created, utilising the Royal Melbourne Hospital Patient Survey FV screening and response tool. Data were collected over a two-month time period, via ipad. Clinicians invited all consumers (age range 18 to 64 years) attending the service to participate on data collection days, unless any of the exclusion criteria were present: a) clinical interaction occurring in a non-confidential environment; b) acute distress/crisis; c) clinician concerns about affecting rapport; and d) cognitive impairment, known disability or diminished capacity preventing them from reading or understanding the survey questions. Categorical and Likert type survey responses were explored descriptively. All variables collected in the survey were provided, specifically the percentage of responses in each category for each question. Free-text responses were analysed using qualitative description of the text-box response content. Results: 35 consumers participated. 47% reported being screened for at least one family violence issue on at least one occasion. 26% reported disclosing FV concerns. All those disclosing felt mildly or very supported by the clinician’s response, and two-thirds received assistance they found helpful. 9% reported wanting to disclose FV concerns but not feeling comfortable to do so. Consumers indicated that FV should be spoken about more, that receiving assistance is helpful, but that responses varied in quality depending on the discipline of the clinician. Conclusion: FV screening rates were found to be suboptimal as unmet needs were identified. Further training and services changes are required to improve screening rates, increase client comfort to disclosure, and optimise the clinical response to disclosures.

Families created via identity-release egg donation: disclosure and an exploration of donor threat in early childhood

Research questionWhat are mothers’ disclosure intentions and practices from infancy to early childhood, and is perceived donor threat associated with disclosure in identity-release egg donation families when the children are aged 5 years? DesignThis longitudinal study included 73 heterosexual-couple families with infants born following IVF-egg donation at phase one, and 61 families with 5-year-old children at phase two. At both phases, mothers were interviewed about their disclosure intentions and practices. At phase two, mothers were interviewed about their feelings about future donor–child contact. ResultsMost mothers (75.3%) intended to disclose their use of egg donation to their children at phase one; half had begun to do so when their children were aged 5. Most remaining mothers planned to tell, although a minority were uncertain or planned not to disclose. When the child was aged 5, four mothers had started telling them that they could access their donor's identifying information at age 18, and most (84%) intended to do so in the future. Most couples agreed on a disclosure strategy at phase two. Most mothers perceived at least some threat from future donor–child contact, but this was unrelated to their disclosure practices. ConclusionsDisclosure intentions in infancy are borne out in early childhood. Despite perceiving some threat from future donor–child contact, most mothers intended telling their child that they could access the donor's identifying information at age 18. Revisiting these families as the children grow older will be important to understand how the mothers’ perceived donor threat may change over time, and how this is related to family processes.

Determinants Of Family Ownership, Leverage, And Disclosure Of Corporate Social Responsibility (Csr) On Tax Avoidance With Institutional Ownership As A Moderation Variable

The purpose of this study was to analyze the effect of family ownership, leverage, and disclosure of corporate social responsibility on tax avoidance with institutional ownership as a moderating variable. The population in this study are industrial, chemical, and mining sector companies listed on the Indonesia Stock Exchange (IDX) in 2021. Determination of the number of samples using purposive sampling method. The method used is a quantitative descriptive approach. Data analysis was performed using Smart PLS 3.2.9. The results of hypothesis testing indicate that family ownership and leverage have an effect on tax avoidance, while corporate social responsibility has no effect on tax avoidance. Institutional ownership can strengthen the influence of family ownership, leverage, and corporate social responsibility on tax avoidance.

Correlates of self-reported and biomarker based adherence to daily oral HIV pre-exposure prophylaxis among a cohort of predominantly men who have sex with men in Nigeria.

HIV pre-exposure prophylaxis (PrEP) significantly reduces the risk of HIV acquisition. However, studies have demonstrated discordance between self-reported measures and biomedical benchmarks of PrEP adherence. We estimated the correlation between self-reported PrEP adherence and PrEP biomarkers and explored factors associated with adherence among men who have sex with men (MSM) in Nigeria. TRUST-PrEP, an open-label, prospective study; conducted in Abuja between April 2018 and May 2019. MSM ≥ 18 years with substantial HIV risk were enrolled. Participants reported PrEP adherence in the last month using a 4-point scale from "poor" to "perfect" and serum samples for PrEP biomarkers were collected at months 3 and 9. Serum tenofovir concentration was measured by liquid chromatography-tandem mass spectrometry and considered protective for adherence if ≥ 4.2 ng/ml. Spearman's rank correlation was used to estimate correlation between self-reported adherence and measured tenofovir levels. Generalized estimating equations with a logit link was used to estimate adjusted odds ratios (aORs) and 95% confidence intervals (CIs) for associations between self-reported adherence and laboratory-measured adherence. A total of 219 MSM with median age 23 (interquartile range 20-27) years had at least one PrEP biomarker assay. Only 66/219 (30%) had at least one record of protective tenofovir concentration. Correlation between tenofovir and self-reported adherence at 3 and 9 months were 0.1 and 0.02 respectively. Furthermore, 17/219 (8%,) and 49/219 (22%) had serum tenofovir of 4.2-35.4 ng/mL and ≥ 35.5 ng/mL, corresponding to at least 4 and 7 days' PrEP use in a week, respectively. PrEP adherence was higher among participants introduced to PrEP in the clinics compared with communities (aOR: 8.35, 95%CI: [3.24, 21.5]) and those with same-sex practices family disclosure (aOR: 3.60 95% CI: [1.73, 7.51]). Self-reported PrEP adherence poorly correlated with biomarkers. Facilitating clinic-based PrEP introduction and disclosure of same-sex practices to family among MSM may improve PrEP adherence.

Screening for adverse childhood experiences in pediatrics: A randomized trial of aggregate-level versus item-level response screening formats.

While there is growing support for screening for Adverse Childhood Experiences (ACEs), rigorous evidence on the efficacy and preference of screening methods is needed. To examine caregiver: (1) rates of disclosure of their child's exposure to ACEs using item-level response (each item can be endorsed) versus aggregate-level response (only total score reported) screening format, (2) associations between family demographic factors and disclosure by screening format, and (3) emotional reaction and experience of screening formats in a diverse, low-income pediatric population. Caregiver participants (n = 367) were randomized to complete the Pediatric ACEs and Related Life Events Screener (PEARLS) tool, in an aggregate-level response vs item-level response format from 2016-2019. Select caregivers (n = 182) participated in debriefing interviews. T-test and chi-square analyses in 2019 compared PEARLS disclosure rates and reactions between the screening modalities. Regression models explored interactions with child characteristics. Thematic analysis of interview notes captured caregiver screening experience. PEARLS disclosure rates were significantly higher in the aggregate-level response compared to the item-level response screening arm (p <0.05). This difference was accentuated for children identified as black and/or male (p <0.05). Caregiver reactions to PEARLS screening were rarely negative in either screening format. Qualitative data demonstrated strong caregiver preference for the item-level response format; additional themes include provider relationship, fear with disclosure, and screening outcome expectations. While caregivers reported a preference for the item-level response format, the aggregate-level response screening format elicited higher disclosures rates particularly for children who are black or ma. Clinical trial registry: NCT04182906.

Assessment of decisional capacity for Alzheimer’s disease PET disclosure among cognitively symptomatic individuals

AbstractBackgroundOlder adults are highly interested in learning their Alzheimer’s disease (AD) positron emission tomography (PET) amyloid‐beta (Aβ) and tau results. However, knowledge about the meaning, uses, and risks of learning personal biomarker results is variable. Tools are needed to assess decisional capacity prior to biomarker disclosure, particularly for individuals with cognitive impairment.Methods30 participants (46.7% female; 93.3% white, age = 71.9±7.14 years) diagnosed with either mild cognitive impairment (MCI; 60.0%) or dementia‐Alzheimer’s type (DAT; 40.0%) completed Aβ and tau PET, an interactive education session and results disclosure decision‐making assessment. When available, cognitively unimpaired care partners (n = 27) attended these sessions and their ability to demonstrate decisional capacity for participant biomarker disclosure was assessed. Decisional elements evaluated included understanding of the meaning of biomarker results, appreciation of risks and benefits of engaging in disclosure, communication of a choice to learn the participant’s biomarker results, and demonstration of a rationale for engaging (or not) in disclosure. Chi‐squared tests were used to assess whether successful demonstration of each element differed by diagnosis.ResultMore participants with MCI (77.8%) than participants with DAT (25.0%) demonstrated disclosure decisional capacity (χ2 = 8.17, p = .008). Across the full sample, participants had the most difficulty understanding the difference between AD and DAT (34.6% incorrect), the meaning of elevated amyloid (19.0% incorrect) or tau (10.0% incorrect), and biomarker disclosure risks (19.0% incorrect). Compared to participants with DAT, those with MCI were more likely to demonstrate understanding of biomarker results (33.3% DAT v. 77.8% MCI; χ2 = 5.93, p = .024) and appreciation of personal benefits and risks of biomarker disclosure (33.3% DAT v. 83.3% MCI; χ2 = 7.75, p = .009). There were no differences in demonstration of rationale or communication of choice by diagnosis. All care partners demonstrated adequate decisional capacity for disclosure of the participant’s PET results.ConclusionAppreciation and understanding, two elements rarely evaluated in clinical or research settings, are more challenging than rationale or choice for cognitively impaired participants to demonstrate. Prior to disclosure, education should emphasize the possible meaning, usefulness, and risks of PET amyloid and tau information. Family or care partner disclosure decision‐making assessment should be a standard part of disclosure protocols.

Familial Support and Disclosure: A Two-Sample Study of LGBT Sexual Assault

Lesbian, gay, bisexual, and transgender (LGBT) individuals have higher rates of sexual assault and rape victimization compared with their cisgender (cis) and heterosexual counterparts. One support system that may be helpful for survivors of sexual assault is family support, which reduces the impact of some of sexual assault’s negative health outcomes. Two phases of online survey data from U.S. adults were merged—a panel sample that included cis women and transgender/non-binary (trans/NB) people (n = 1,366) and a social media sample that included cis women, trans/NB people, and cis men (n = 1,540). Approximately 62% of trans/NB individuals, 47% of lesbian women, 65% of bisexual women, 44% of heterosexual women, 45% of gay men, 40% of bisexual men, 25% of heterosexual men disclosed rape in their lifetime. Disclosing to a family member was lowest among cis men (11%), while overall family support was lowest among trans/NB individuals. The combination of lack of family support, high rates of victimization, and low disclosure rates among specific subgroups of the LGBT community puts people at greater risk for sexual assault-related negative health outcomes. Researchers may consider family support as an important confounding variable to assess when examining negative health outcomes among LGBT sexual assault victims.

Psychological adjustment in disclosing and non-disclosing heterosexual-couple families following conception with oocytes or spermatozoa from identity-release donors

Research questionIs there a relationship between disclosure and psychological adjustment in heterosexual-couple families following oocyte donation and sperm donation when the child is 7 years old? DesignThis was a cross-sectional study of heterosexual couples with 7- to 8-year-old children conceived with identity-release oocyte donation (n = 83, response rate 56%) or sperm donation (n = 113, response rate 65%). Participants individually completed instruments for the assessment of parents’ emotional distress (HADS), parenting stress (SPSQ) and relationship quality (ENRICH), and their child's psychological adjustment (SDQ-Swe) and reported whether they had talked with their child about their donor conception. ResultsAbout half of parents had talked with their child about their donor conception (oocyte donation 61%, sperm donation 58%). Separate analyses for mothers and fathers showed no main effects of disclosure or type of donation on the outcomes, nor were there any interaction effects. Overall, mothers and fathers in oocyte donation and sperm donation families were found to be well adjusted, reporting within-normal range levels of anxiety, depression and parental stress, and a high relationship quality. The children were well adjusted, with low levels of emotional and behavioural problems. ConclusionsOverall, the present results confirm previous research indicating that early disclosure of the donor conception to children is not associated with negative outcomes for parents or children. Heterosexual couples using oocyte or sperm donation should be informed that disclosure when the child is 7–8 years old is not detrimental to the psychological adjustment of families.