Preferences For Disclosure Research Articles

The Dynamics of Diabetes Disclosure in the Workplace

Background/Objectives: Individuals with diabetes often experience discrimination and barriers at work and are confronted with the challenge of deciding whether to disclose their health status in their workplace. This study explores the disclosure of diabetes in the workplace. The research was based on a previously developed questionnaire. Methods: Two hundred and five persons with diabetes who were employed in Greece participated in the research. Results: The majority of the participants chose to disclose. Demographic characteristics influenced their disclosure decision, with the diabetes type and the employment sector showing a more significant impact. The majority of the participants showed a strong preference for early disclosure. Conclusions: The main reasons for disclosure were the belief that there was no reason to conceal it and the need to know in an emergency. In contrast, the main reasons for concealment were the fear of being fired or not being hired, the belief that disclosure was unnecessary, and concerns about being treated differently. The present research brings to light the reality of employed people with diabetes in Greece. Future research could focus on a deeper understanding of the disclosure issues of people with diabetes and other non-visible disabilities.

Experiences and preferences of women with CAH and parents about disclosure of childhood surgery

Complete disclosure of childhood genital surgery to patients with congenital adrenal hyperplasia (CAH) is a critical part of CAH care. There are no guidelines or uniform recommendations on the timing and content of surgical disclosure discussions. Our objective was to describe the experiences and preferences of females with CAH and parents of females with CAH who underwent childhood genital surgery regarding surgical disclosure. We conducted an anonymous cross-sectional online survey of females with CAH (46XX, ≥16 years [y] old) and parents of females with CAH who underwent genital surgery before age 4y in North America. Participants reported experiences, preferences, and advice about initial ("first time you were told") and complete disclosure ("told all details"). Non-parametric statistics and qualitative analysis were used. Participants included 59 females with CAH (median age: 37y, 92% White, 93% non-Hispanic) and 41 parents (median: 36y, 85% White, 93% non-Hispanic, daughter median: 26y). The 76% of females who received complete disclosure were younger (median age: 33y) and underwent surgery more recently (median decade: 1980s) than the 14% who received only initial disclosure (median: 47y, 1970s) and the 10% who did not receive any disclosure (median: 60y, 1960s, p=0.0003, Summary Figure). Females reported median ages of initial and complete disclosure as 7-10y and 11-13y, respectively. Disclosure was preferred by 98% of females with initial disclosure by age 14y and complete disclosure by 18y. Parents reported similar findings. Most disclosures were by mothers (initial: 82%, complete: 64%). Doctors were more involved in complete vs. initial disclosures (complete: 47%, initial: 13%, p<0.001). Qualitative analysis of advice about surgical disclosure revealed 8 themes. Disclosure of childhood genital surgery to women with CAH has increased over time. Although timing of disclosure varied, women preferred disclosure, and that it be initiated before age 14y and completed by age 18y.

Impact of personalized risk scores on shared decision making in left ventricular assist device implantation: Findings from a qualitative study

ObjectiveTo assess stakeholders’ perspectives on integrating personalized risk scores (PRS) into left ventricular assist device (LVAD) implantation decisions and how these perspectives might impact shared decision making (SDM). MethodsWe conducted 40 in-depth interviews with physicians, nurse coordinators, patients, and caregivers about integrating PRS into LVAD implantation decisions. A codebook was developed to identify thematic patterns, and quotations were consolidated for analysis. We used Thematic Content Analysis in MAXQDA software to identify themes by abstracting relevant quotes. ResultsClinicians had varying preferences regarding PRS integration into LVAD decision making, while patients and caregivers preferred real-time discussions about PRS with their physicians. Physicians voiced concerns about time constraints and suggested delegating PRS discussions to advanced practice providers or nurse coordinators. ConclusionsIntegrating PRS information into LVAD decision aids presents both opportunities and challenges for SDM. Given variable preferences among clinicians and patients, clinicians should elicit patients’ desired role in the decision-making process. Addressing time constraints and ensuring patient-centered care will be crucial for optimizing SDM.Practice implicationsClinicians should elicit patient preferences for PRS information disclosure and address challenges, such as time constraints and delegation of PRS discussions to other team members.

“I felt like it was the right thing to do”: How college students’ decisions to disclose COVID-19 diagnoses reflect privacy preferences, perceptions of stigma, and cultural norms

Background: COVID-19 diagnoses can be difficult to share, as COVID-19 faces ongoing stigmatization. Aim: Framed by communication privacy management theory, this study examines how college students make decisions to disclose their COVID-19-positive statuses (or why they may not), and how those decisions are affected by perceptions of stigma and cultural norms. Methods: This study utilizes a qualitative, interview-based methodology with twenty undergraduate student participants. Results: Responses are analyzed for themes relating to communication privacy management, noting information control and co-ownership, boundary coordination, and forced/required disclosures. Responses demonstrate that a stigmatized view of COVID-19 has largely subsided, but still affects disclosure preferences and decisions. In addition, several cultural factors also shape beliefs about disclosure practices. Discussion: These findings illuminate how perceptions of COVID-19’s stigma and cultural norms shape college students’ notions of privacy, information control, co-ownership, and ultimately disclosure practices. Highlighting implications for how best to respond to future pandemics, the data presented herein provides an exploration of the relationship between privacy strategies, stigmatization beliefs, and cultural norms. Conclusion: This information will be useful in generating institutional, education, and public health responses to future pandemics, as findings suggest an under-theorized relationship between the areas of privacy management, stigmatization, and cultural norms.

A Consumer Data Privacy Protection Model Based on Non-Parametric Statistics for Dynamic Data Publishing in e-Commerce Platforms

Objectives: Consumer data privacy on e-commerce platforms is increasingly crucial. This study aims to investigate privacy protection mechanisms, particularly focusing on personal and corporate secrets. It seeks to understand individual perspectives on privacy and preferences for data disclosure. The primary objective is to explore methods for safeguarding personal information while maintaining data integrity. Methods/Analysis: We employ non-parametric statistical techniques to analyze consumer behavior and preferences on e-commerce platforms. This involves examining patterns of data disclosure and identifying sensitive information shared by users. By studying communication dynamics and recording practices, we assess the efficacy of current privacy protection measures. Novelty/Improvement: This study contributes to the understanding of consumer privacy protection by emphasizing the importance of non-parametric statistical methods in e-commerce research. Our findings underscore the need for enhanced privacy measures. We advocate for further research and development of innovative privacy-enhancing technologies to address evolving privacy challenges in online commerce. Findings:Our research highlights the significance of personal privacy concerns in e-commerce settings. We identify a spectrum of privacy attitudes among users, ranging from strict confidentiality to selective disclosure. Furthermore, our analysis reveals potential vulnerabilities in current privacy safeguards, particularly regarding the collection and storage of sensitive data on e-commerce platforms. Doi: 10.28991/HIJ-2024-05-02-013 Full Text: PDF

Preference and Disclosure of Fetal Gender to Pregnant Women during Prenatal Ultrasonography in South South Nigeria.

Ultrasound scan (USS) in pregnancy has become a common diagnostic tool used in the assessment of pregnancy in recent time. In the course of routine pregnancy assessment using USS, some pregnant women will request to know the sex of their unborn babies. Their reasons for wanting to know the gender of their baby could be either for social reason like planning for an unborn child or their desire for a preferred gender. The aim of the study was to evaluate gender preferences and disclosure of foetal sex at prenatal USS. This was a cross-sectional study conducted at the antenatal clinic of Central Hospital Agbor, Delta State, Nigeria. A total of 235 consecutive consenting women who came for antenatal care (ANC) registration were recruited for the study after obtaining their informed written consent. Questionnaire was used to seek for their sociodemographic characteristics, preference and desires for foetal gender disclosure, reasons for gender disclosure, and awareness of USS accuracy for gender determination. The desire to know the sex of baby was high (99.6%). The major reason for wanting to know the sex of baby was to plan for the unborn child (47.7%) and maternal curiosity (37.0%). Majority of the women (57.4%) had no gender preference. Sixty percent (60%) were not aware that USS sex diagnosis could be wrong. There is a strong desire by pregnant women to know the sex of their babies at routine USS. Considering the fact that many of the women were not aware that there could be wrong diagnosis at prenatal ultrasound, it is suggested that adequate counselling be given before fetal sex disclosure.

Health-related social needs information in the emergency department: clinician and patient perspectives on availability and use

BackgroundPatient health-related social needs (HRSN) complicate care and drive poor outcomes in emergency department (ED) settings. This study sought to understand what HRSN information is available to ED physicians and staff, and how HRSN-related clinical actions may or may not align with patient expectations.MethodsWe conducted a qualitative study using in-depth semi-structured interviews guided by HRSN literature, the 5 Rights of Clinical Decision Support (CDS) framework, and the Contextual Information Model. We asked ED providers, ED staff, and ED patients from one health system in the mid-Western United Stated about HRSN information availability during an ED encounter, HRSN data collection, and HRSN data use. Interviews were recorded, transcribed, and analyzed using modified thematic approach.ResultsWe conducted 24 interviews (8 per group: ED providers, ED staff, and ED patients) from December 2022 to May 2023. We identified three themes: (1) Availability: ED providers and staff reported that HRSNs information is inconsistently available. The availability of HRSN data is influenced by patient willingness to disclose it during an encounter. (2) Collection: ED providers and staff preferred and predominantly utilized direct conversation with patients to collect HRSNs, despite other methods being available to them (e.g., chart review, screening questionnaires). Patients’ disclosure preferences were based on modality and team member. (3) Use: Patients wanted to be connected to relevant resources to address their HRSNs. Providers and staff altered clinical care to account for or accommodate HRSNs. System-level challenges (e.g., limited resources) limited provider and staff ability to address patients HRSNs.ConclusionsIn the ED, HRSNs information was inconsistently available, collected, or disclosed. Patients and ED providers and staff differed in their perspectives on how HSRNs should be collected and acted upon. Accounting for such difference in clinical and administrative decisions will be critical for patient acceptance and effective usage of HSRN information.

To Share or Not to Share: Understanding and Modeling Individual Disclosure Preferences in Recommender Systems for the Workplace

Newly-formed teams often encounter the challenge of members coming together to collaborate on a project without prior knowledge of each other's working and communication styles. This lack of familiarity can lead to conflicts and misunderstandings, hindering effective teamwork. Derived from research in social recommender systems, team recommender systems have shown the ability to address this challenge by providing personality- derived recommendations that help individuals interact with teammates with differing personalities. However, such an approach raises privacy concerns as to whether teammates would be willing to disclose such personal information with their team. Using a vignette survey conducted via a research platform that hosts a team recommender system, this study found that context and individual differences significantly impact disclosure preferences related to team recommender systems. Specifically, when working in interdependent teams where success required collective performance, participants were more likely to disclose personality information related to Emotionality and Extraversion unconditionally. Drawing on these findings, this study created and evaluated a machine learning model to predict disclosure preferences based on group context and individual differences, which can help tailor privacy considerations in team recommender systems prior to interaction.

Pay equity perceptions and pay disclosure preferences: the moderating role of pay transparency

PurposeThis study aims to explore how individual-level and organizational-level factors interact to influence pay information (PI) seeking and PI sharing preferences in PI conversations (i.e. the face-to-face communications context). The authors examine how an individual’s judgment of their pay relative to others – or pay equity perception – affects their PI seeking and PI sharing preferences and how those relationships are affected by organizationally created pay transparency policies and pay transparency practices.Design/methodology/approachUsing a 2 × 2 × 2 experimental design on the MTurk platform, the authors used a scenario-based prompt method to manipulate employee perceptions of pay equity and organizational pay transparency and tested those effects on employee pay disclosure preferences. The authors consider both pay policy and pay practice dimensions of pay transparency and both PI seeking and PI sharing dimensions of pay disclosure preferences. The final sample had 597 participants.FindingsThe authors find employees’ pay equity perceptions are negatively related to PI seeking behaviors and are even more so when organizations have restrictive pay transparency policies. Also, both pay transparency policy and pay transparency practice increase PI sharing preferences.Originality/valueThe authors provide insight into how individual perceptions drive pay disclosure motivations and the role of organizational policy and practice in influencing pay disclosure preferences within PI conversations. The authors provide insight into the antecedents that shape pay disclosure preferences, which lead to a both PI conversations among coworkers and an increase in one’s pay understanding. This study shows the contextual nature of PI seeking and PI sharing preferences, which are a motivational antecedent to pay-related sensemaking behaviors.

Preferred Communication Strategies for People with Communication Disabilities in Health Care Encounters: a Qualitative Study.

People with communication disabilities (CDs), which includes disabilities in speech, language, voice and/or hearing, experience health and healthcare disparities. A barrier to accessing high-quality, equitable care is the lack of effective communication between patients and their providers. In designing a patient-prompted tool to facilitate communication, we analyzed qualitative feedback on communication strategies and the experience of people with CDs, caregivers, and providers in healthcare encounters. We aimed to describe communication strategies that patients with CDs find most useful and optimize a tool for patients to share their communication strategy preferences during clinical encounters. While patient-provider communication is paramount in every interaction, we aimed to highlight the intricacies of optimizing communication for this population. We performed a qualitative study utilizing focus groups and interviews with patients with CDs, their caregivers, and healthcare providers. A total of 46 individuals participated in focus groups or interviews; 26 participants self-reported a CD, nine were caregivers, and 11 were providers. Participants represented diverse types of CDs, including stuttering, aphasia, hearing loss, and people with autism or cerebral palsy who use assistive technology to communicate. Analysis of qualitative interview and focus group data was guided by a qualitative content analysis approach. We identified three themes: (1) While communication strategies should be individualized, participants agreed upon a consolidated list of best strategies and accommodations. We used this consolidated list to finalize tool development. (2) Patients and providers preferred disclosure of the CD and desired communication strategies before the appointment. (3) Providers often do not use communication strategies and accommodations during clinical encounters. For patients with CDs, it is critical to acknowledge and document the CD and individualize communication strategies during healthcare visits to facilitate communication. Studies are needed to evaluate whether improved communication strategy usage leads to improved health outcomes for this population.

CEO Political Ideology and Voluntary Forward-Looking Disclosure

Abstract This study investigates whether the management earnings forecasts of Republican and Democratic CEOs differ due to systematic differences in their information disclosure preferences. We find that Republican CEOs prefer a less asymmetric information environment than Democrat CEOs, and thus make more frequent, timelier, and more accurate disclosures than Democrat CEOs. Results using the propensity score matched sample and difference-in-differences analysis show that our results are unlikely to be driven by potential endogeneity. Our results are robust to controlling for various CEO characteristics and are stronger for firms with higher levels of institutional ownership and litigation risk.

The role of family and culture in the disclosure of bad news: A multicentre cross-sectional study in Pakistan

ObjectivesDisclosure of bad news is distressing for patients and family members. Our aim was to assess patients' perceptions and preferences regarding bad news in the health setting. MethodsCross-sectional, multi-centered study supported by an external grant in 15 Government and Private Hospitals across Pakistan. A sample size of 1673 patients and family members was used. Ethics permission/consent was taken from each participating hospital and participant. Responses were compared across provinces, gender, age, education and income. Results>80% patients preferred their relatives to know the diagnosis first and they wanted the news to be disclosed to them by doctors. Significant association between education level, income and preference for wanting to know the diagnosis was found. Reasons for wanting to know the diagnosis included treatment, prognosis and prevention options whereas reasons for not wanting to know included fear of emotions and God's will. ConclusionThe majority of Pakistani patients want to be informed and want the family to know first. Preferences for disclosure vary across, age, education and income level. InnovationFirst countrywide study on this topic. Identifies need for culturally sensitive guidelines that include the family's role in disclosure of bad news.

A question prompt list for sudden unexpected death in epilepsy

A question prompt list for sudden unexpected death in epilepsy

0900 A Community-based Survey of Personal Perspectives Regarding Prodromal Sleep Screening for Neurodegenerative Disorders

Abstract Introduction Sleep markers can assess prodromal risk for neurodegenerative disorders (NDD). In a recent study conducted by the Mayo Clinic, most isolated REM sleep behavior disorder patients preferred knowing about their risk for parkinsonism or dementia. In their email survey, patients indicated a strong preference for disclosure of prognostic NDD risk in order to spur family discussions and plan for the future. For this pilot study, the Mayo questions were modified in order to investigate the perspectives and preferences of community-based adults about potentially being at-risk of a NDD and how it might impact their lives. Methods A brief survey was administered to Rotary Club attendees prior to a presentation on sleep and neurodegenerative disease. Each question offered five responses: strongly disagree, disagree, neutral, agree, or strongly agree. Personal identifiers were not obtained. Thirty-four surveys were completed from approximately equal numbers of older men and women with estimated ages above 50 years. Personal information were not obtained (e.g., age and sex). Results When asked whether it was important to know their NDD risk given the fact that there are no known methods to prevent or cure the disease, most (83%) strongly agreed or agreed, while only 18% preferred not to know their NDD risk. The majority felt they would be more pessimistic about their future if identified as being at risk of NDD the (62% strongly agreed/agreed). Most believed their priorities and plans for living life would change (68% strongly agreed/agreed). Further, the vast majority felt that knowing NDD risk would help them plan for the future (89% strongly agreed/agreed), including planning for health resources and support (88% strongly agreed/agreed). Conclusion Eighty-three percent of those surveyed reported they would benefit from knowing if they were at risk of NDD, even though the majority would feel more pessimistic about their future. The vast majority (89%) responded that knowing their NDD risk would help them plan for the future. These results suggest that most community adults might be receptive to future sleep screening for NDD with results. Investigations are underway to confirm these findings in a broader community-based study. Support (if any) NIA-R44AG050326

Calling for transparency: Evidence from a field experiment

We examine how firms respond to requests for enhanced disclosure that we make on an online investor platform. Exploiting variation in firms' customer and supplier disclosures, we ask a randomized set of non-disclosing firms to provide information on their customers' and suppliers' identities. We find that the firms' probability of disclosure depends on the basis we give for the demand—requests appealing to disclosure's usefulness to investors lead to more frequent disclosure, while those appealing to regulators' preference for disclosure lead to less frequent disclosure. The requests we make on the platform lead to more frequent customer- and supplier-related inquiries from other platform users. We also find that the treatment firms' disclosure of customer and supplier information improves in the next period's regulatory filings. The findings suggest that investor platforms can enhance corporate transparency by increasing retail investors' ability to demand information.

Cancer Survivors' Experiences With and Preferences for Medical Information Disclosure and Advance Care Planning: An Online Survey Among Indonesian Cancer Support Groups.

To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning. On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia. A total of 1,030 valid responses were received. Most participants were younger than 60 years (92%), female (91%), married (78%), Muslim (75%), diagnosed with breast cancer (68%), highly educated (64%), and more than one year beyond diagnosis of their cancer. If diagnosed with a life-limiting illness, participants wished to be informed about their diagnosis (74%), disease severity (61%), estimated curability (81%), expected disease trajectory (66%), and estimated life expectancy (37%). Between 46%-69% of the participants wished to discuss four topics of advance care planning (end-of-life treatments, resuscitation, health care proxies, and what matters at the end of life); 21%-42% had done so. Of those who wished to discuss these topics, 36%-79% preferred to do so with their family members. The most important reasons for not being willing to engage in advance care planning were the desire to surrender to God's will and to focus on here and now. In a group of cancer survivors, most of them were highly educated, young, female, and diagnosed with breast cancer. Their preferences for medical information and advance care planning varied, with the majority wishing for information and involvement in advance care planning. Culturally sensitive advance care planning involves health care professionals eliciting individuals' preferences for medical information disclosure and discussing different topics in advance care planning conversations.

The actualisation of mobile dating application affordances to support racial digital dating intentions: the case of tinder

ABSTRACT Mobile dating applications like Tinder have changed how romantic relationships are pursued. However, real-world issues (e.g. racial hierarchies) are recreated within digital spaces and influence inter- and intra-racial dating intentions. The study explored how users actualise the affordances of a mobile dating application like Tinder to fulfil their racialized dating intentions. Through a qualitative study based on 25 semi-structured interviews, four novel propositions are formulated. The study specifically contributes to affordance theory as well as theories around self-presentation, impression formation and preference disclosure. The propositions articulate how inter- and intra- racial dating intentions are supported when mediated by the actualisation of mobile dating applications affordances namely Visual Dominance, Synchronicity and Locatability. The study also bridges a gap in mobile dating literature by focusing on a context beyond the Global North context, namely South Africa.

Communication about sudden unexpected death in epilepsy: Understanding the caregiver perspective

AbstractObjectiveWe aimed to characterize (1) the caregiver experience of learning about sudden unexpected death in epilepsy (SUDEP), and (2) caregiver preferences for SUDEP risk disclosure.MethodsWe distributed a 24‐question survey to caregivers of children with epilepsy. Free text questions were analyzed using a rapid qualitative analysis approach.ResultsTwo hundred and twelve caregivers of people with epilepsy completed the survey, including 12 bereaved caregivers. Caregivers' children had a high seizure burden, with a median seizure frequency of 24 seizures per year (range: 1 to ≥100). Most participants were aware of SUDEP at the time of the survey (193/212; 91%) though only a minority had learned about SUDEP from a healthcare provider (91/193; 47.2%). Caregivers typically learned about SUDEP from a nonprofit or online source (91/161; 56.5%). Almost all caregivers wanted to discuss SUDEP with their child's healthcare provider (209/212; 98.6%), and preferred disclosure from epileptologists (193/212; 91%), neurologists (191/212; 90.1%), and/or primary care providers (98/212; 46.2%). In open‐ended responses, caregivers highlighted the value of learning about SUDEP from a healthcare provider, the importance of pairing SUDEP risk disclosure with a discussion of how to mitigate risk, and the need for educational resources and peer support.InterpretationCaregivers of people with epilepsy appreciate when healthcare providers disclose information about SUDEP, yet typically hear about SUDEP elsewhere. These findings underscore the importance of interventions to improve and support SUDEP risk disclosure. Future work should evaluate strategies to disclose SUDEP risk and the impact of early SUDEP risk disclosure.

Information disclosure to cancer patients in Mainland China: A meta-analysis.

This study aims to systematically examine Chinese cancer patients' and families' preferences for information disclosure to the patient, patient awareness, and predictors of patient awareness. The Preferred Reporting Items for Systematic reviews and Meta-Analyses guidelines were followed. Web of Science, Scopus, Proquest, Taylor & Francis Online, and China National Knowledge Infrastructurewere searched in April 2022 and Chinese Biomedical Literature Database in July 2022 for quantitative studies. The Mixed Methods Appraisal Tool was used for quality assessment. A total of 22 studies were included, and the average quality score was 0.65/1. Meta-analyses showed that 89.6% and 81.8% of cancer patients wanted to know their diagnosis and prognosis, respectively. Meanwhile, 50.0% and 32.4% of families prefer diagnosis disclosure and prognosis disclosure to the patient, respectively. Significantly more patients than families favored disclosure to the patient. In reality, only 59.3% of cancer patients know their diagnosis, and 19.9% know their prognosis. For predictors, while patients' gender, cancer type (breast cancer or not), treatment method (operation or other), or complications (yes or no) do not influence diagnosis awareness, being younger, being married, having higher educational attainment, having early-stage rather than late-stage cancer, and being in a higher-grade hospital all predict better chances of knowing a diagnosis. No study explored predictors of patients' prognosis awareness. The findings did not vary according to publication time or sample size. Chinese cancer patients are eager to know their diagnosis and prognosis, but families are hesitant about disclosure to the patient, and patients' awareness is low. While cultural, legal, and medical backgrounds lay the foundation for information disclosure in Mainland China, case-by-case practical factors also make a difference.

Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study.

Recall-by-genotype (RbG) research recruits participants previously involved in genetic research based on their genotype. RbG enables the further study of a particular variant of interest, but in recalling participants, it risks disclosing potentially unwanted or distressing genetic information. Any RbG strategy must therefore be done in a manner that addresses the potential ethical and social issues. As part of an RbG pilot on the penetrance of Parkinson's disease variants, we conducted an empirical mixed-method study with 51 participants of the Cooperative Health Research in South Tyrol (CHRIS) study to understand participant views on RbG research approach. Participants were disclosed the disease under investigation but not the individual variant carrier status. Results showed that participants filtered the information received through personal experience and enacted mechanisms to address the concerns raised by invitation by resorting to personal resources and the support provided by experts. While the non-disclosure of the Parkin variant carrier status was deemed acceptable, disclosing the disease under study was important for participants. Participant preferences for disclosure of the disease under investigation and the carrier status varied according to how the knowledge of individual carrier status was perceived to impact the participant's life. This study provided insights into participant response to the RbG research approach, which are relevant for RbG policy development. A suitable communication strategy and granular options addressing preferences for invitation in the original informed consent are critical for an ethically informed RbG policy.