Actual Disclosure Research Articles

Two decades after legislation on identifiable donors in Sweden: are recipient couples ready to be open about using gamete donation?

BACKGROUND Two decades after the introduction of Swedish legislation that allows children born as a result of gamete donation access to identifying information about the donor, a nationwide multicentre study on the psychosocial consequences of this legislation for recipients and donors of gametes was initiated in 2005. The aim of the present study was to investigate recipient couples' attitudes and behaviour regarding disclosure to offspring and others, attitudes towards genetic parenthood and perceptions of information regarding parenthood after donation. METHODS The present study is part of the prospective longitudinal 'Swedish study on gamete donation', including all fertility clinics performing donation treatment in Sweden. A consecutive cohort of 152 heterosexual recipient couples of donated oocytes (72% response) and 127 heterosexual recipient couples of donated sperm (81% response) accepted participation in the study. In connection with the donation treatment, male and female participants individually completed two questionnaires with study-specific instruments concerning disclosure, genetic parenthood and informational aspects. RESULTS About 90% of participants (in couples receiving anonymous donated gametes) supported disclosure and openness to the offspring concerning his/her genetic origin. Only 6% of all participants had not told other people about their donation treatment. Between 26 and 40% of participants wanted additional information/support about parenthood following donation treatment. CONCLUSIONS Two decades after the Swedish legislation of identifiable gamete donors, recipient couples of anonymously donated sperm and oocytes are relatively open about their treatment and support disclosure to offspring. Recipient couples may benefit from more information and support regarding parenthood after gamete donation. Further studies are required to follow-up on the future parents' actual disclosure behaviour directed to offspring.

An implementation assessment of China's Environmental Information Disclosure Decree

China's 2007 Open Government Information Regulations is widely considered as a milestone in the country's information policy history and is praised as a “sunshine program”. The Environmental Information Disclosure Decree was the first to operationalize these general regulations into a sectoral information disclosure system on environment. This study assessed the implementation of the environmental information disclosure system about six months after the Decree took effect on May 1, 2008. Through reviewing the websites of all 31 provincial Environmental Protection Bureaus and the Ministry of Environmental Protection, conducting an experiment with actual information disclosure request, and through interviews with all provincial Environmental Protection Bureaus, this article concluded that the implementation of the environmental information disclosure system still falls short. Future improvements should focus on further publicity of the regulations and decree to enhance public participation, the establishment of an independent evaluation and supervision system for information disclosure, the exchange of experiences and best practices among provincial Environmental Protection Bureaus, and on strengthening the legal status of environmental information disclosure.

Bank Disclosure Index: Global Assessment of Bank Disclosure Practices

The report assigns a composite bank disclosure index to each of the 180 countries surveyed in the study, yearly since 1994. Using a checkbox approach to analyze financial statements of individual banks, the index seeks to quantitatively measure the actual disclosure practices of commercial banks around the world, in relation to their assets, liabilities, funding, incomes, and risk profiles. The measurement framework is compatible with International Monetary Funds (IMF's), Financial Soundness Indicators (FSI) system, as well as Basel Committee's prescriptions on bank accounting disclosures. The framework is applicable to banks in low and mid-income countries. Specific policy prescriptions can be made automatically based on the sub-index and sub-component scores linked to individual disclosure categories. The report also utilizes the time-series and cross-sectional variations of the index to conduct a series of assessments and diagnoses on several systematically important developing countries and regions, as examples to demonstrate the index's policy applications.

Manager’s Perception of the Importance of Environmental Accounting and its Effect on the Quality of Corporate Environmental Accounting Disclosures: Case from Indonesia

The purpose of this study is to compare perceptions of managers in Indonesia concerning environmental accounting disclosure with actual environmental accounting disclosure. The value of this research is making an original contribution to develop instrument in exploring managerial perception of environmental accounting disclosure. Samples for this study are corporate managerial from listing companies in the Jakarta Stock Exchange and also annual report companies. This research has developed strategies to measure managerial perceptions of environmental accounting disclosure. Mail surveys design used on this study. Analysis used for testing relationship between managerial perception and environmental accounting disclosure is simple regression test. The dependent sample variable data is the latest data published in Jakarta Stock Exchange. This study finds a positive correlation between managerial perception of environmental accounting disclosure and actual environmental accounting disclosure. This result shows that disclosure quality and several legal sanctions in environmental aspects could be empowerment of regulator pasties to force managers to maintain their pollution and reported their activity also in their annual report. In hence, legitimacy theory is used as an explanation for corporate reactions to threats to its legitimacy vis-á-vis the social contract, while legitimacy theory infers motivation to incorporate environmental accounting disclosure.

Retrospective comparison of patient outcomes after in-person and telephone results disclosure counseling for BRCA1/2 genetic testing

Telephone disclosure of BRCA1/2 molecular genetic test results has been proposed as a feasible alternative to traditional in-person results disclosure. The purpose of this study was to investigate the relationship between method of result disclosure with the patient outcome variables of knowledge, cancer worry, cancer risk perception, satisfaction, and cancer screening and prophylactic surgery behaviors. Study participants included 228 women who completed retrospective, self-administered, mailed surveys regarding their pre-test genetic counseling and results disclosure. No significant relationships were found between result disclosure method and the outcome variables investigated. A majority (90%) of individuals who received positive results by telephone returned for follow up visits. Factors which genetic counselors believed influenced their clinical decision to offer telephone disclosure, such as history of breast cancer, a priori risk of genetic mutation and family history of known mutation were not shown to significantly impact the actual disclosure method. This study suggests that telephone results disclosure is clinically appropriate when counselors utilize their clinical judgment to determine which patients are appropriate candidates.

Knowing your customers: Using a reciprocal relationship to enhance voluntary information disclosure

Customer information is increasingly being solicited by organizations as they try to enhance their product and service offerings. Customers are becoming increasingly protective of the information they disclose. The prior research on information disclosure has focused on privacy concerns and trust that lead to intentions to disclose. In this study, we tread new ground by examining the link between intent to disclose information and the actual disclosure. Drawing from social response theory and the principle of reciprocity, we examine how organizations can influence the strength of the link between intent and actual disclosure. We conduct an experiment using 15 pieces of information in a non-commercial context that examines voluntary individual information disclosure. Our results indicate that by implementing a reasoned dyadic condition where the organization provides reasoning on why they are collecting particular information; individuals are more likely to actually disclose more information. The results open up opportunities to go beyond intent, and study the actual disclosure of sensitive information. Organizations can use the concept of reciprocity to enhance the design of information acquisition systems.

Popular press and forensic genetics in Portugal: Expectations and disappointments regarding two cases of missing children

Two cases of missing children in Portugal (Joana and Maddie) have recently highlighted the dilemmas and contingencies associated with the technology of "genetic fingerprinting" for forensic purposes in the context of criminal investigations. The purpose of this article is to analyze the popular press's discourses and representations around forensic genetics in the context of those two highly mediatized criminal investigation cases. The symbolical construction and representation of forensic genetics by the media presents a form of public exposure to beliefs on forensic genetics' characteristics and potential. These are blended with popular cultural contexts that are constructed with reference to images of a super-science which may carry consequences in the public understanding of forensic science. The media coverage of both cases and their actual disclosure resembles the patterns ofa CSI effect, insofar as real science's capabilities and limitations are placed against fictionalized representations of forensic science.

A study of physician investigator (PI) disclosure of alternatives of care and prognostic information to advanced cancer patients (ACP) enrolling in phase I trials

6508 Background: ACP in phase I trials have been described as having an inadequate understanding of several elements of informed consent. However, actual PI disclosure of alternatives to trial participation and prognostic information, and subsequent ACP understanding of these elements, have not been described. Methods: Clinical encounters between 131 ACP entering phase I trials and 25 oncologists at three institutions (University of Chicago; Johns Hopkins; and Duke University) were audio-taped. ACP completed follow-up questionnaires one week later to assess understanding of informed consent elements. Audiotapes were analyzed using the Roter Interaction Analysis System (RIAS) and specifically coded for terms associated with trial alternatives and patient prognosis. Results: To date, 85 encounters have been analyzed. Average encounters length: 30.4 min (range: 5.7–77.8 min). For ACP: median age 60y (33–83); 55% female; 88% Ca; 55% <college educ; 52% income <$60,000. The PI was recorded as discussing options other than anticancer treatment in 47% of encounters. The terms “palliative” or “hospice” were used in 1% and 2.3% of encounters respectively. In 29% of encounters the PI described the option of “doing nothing”. The PI used the terms “death” or “terminal” in 5.8% encounters. The PI was never recorded using the term “dying”. Within these encounters, no ACP was recorded as using any of the following terms: “palliative,” “hospice,” “terminal,” “death,” “dying.” Within follow-up interviews, 30% reported no alternatives to trial participation were discussed; 1% reported that palliative care/hospice was discussed. Based on coding of qualitative responses, 53% of ACP said that either their prognosis was excellent or they didn't know their prognosis. An association was found between recorded physician statements regarding general prognosis and ACP subsequently reporting having discussion regarding life expectancy (59% v. 33%, p = 0.04). Conclusions: PI communication and subsequent measured understanding regarding alternatives to trial participation and prognosis remain inadequate in the setting of phase I trial enrollment. [Table: see text]

Disclosing Errors to Patients: Perspectives of Registered Nurses

Disclosure of medical errors has been conceptualized as occurring primarily in the physician-patient dyad. Yet, health care is delivered by interprofessional teams, in which nurses share in the culpability for errors, and hence, in responsibility for disclosure. This study explored nurses' perspectives on disclosure of errors to patients and the organizational factors that influence disclosure. Between October 2004 and December 2005, 11 focus groups were conducted with 96 registered nurses practicing in one of four health care organizations in the Puget Sound region of Washington State. Focus groups were analyzed using qualitative content analysis. Nurses reported routinely independently disclosing nursing errors that did not involve serious harm, but felt the attending physician should lead disclosures when patient harm had occurred or when errors involved the team. Nurses usually were not involved in the error disclosure discussion among the team to plan for the disclosure or in the actual disclosure, leading to ethically compromising situations in nurses' communication with patients and families. Awareness of existing error disclosure policies was low. Nonetheless, these nurses felt that hospital policies that fostered a collaborative process would be helpful. Nurse managers played a key role in creating a culture of transparency and in being a resource for error disclosures. Nurses conceived of the disclosure process as a team event occurring in the context of a complex health care system rather than as a physician-patient conversation. Nurses felt excluded from these discussions, resulting in their use of ethically questionable communication strategies. The findings underscore the need for organizations to adopt a team disclosure process. Health care organizations that integrate the entire health care team into the disclosure process will likely improve the quality of error disclosure.

Integrating disclosure, patient safety and risk management activities

National Quality Forum safe-practice guidelines encourage hospitals to integrate disclosure, patient safety and risk management activities. Combining collaborative law with a patient safety program in a parallel process makes it possible to achieve this integration. This combination provides for physician-led guidance in determining whether disclosure is required - and, if so, provides mentor assistance with actual disclosure. It offers proactive error prevention by offering a means to quickly utilize information to make safety changes. Additionally, the combination provides an opportunity to access collaborative law at a time when it is still possible to resolve issues without resort to litigation.

Prospective parents' intentions regarding disclosure following the removal of donor anonymity

This short survey of UK infertility counsellors was designed to determine whether the removal of donor anonymity resulted in noticeable changes in prospective parents' stated intentions regarding disclosure of their origins to any children conceived through donor conception. Members of the British Infertility Counselling Association working in Human Fertilisation and Embryology Authority (HFEA) – licensed centres, before and after the legal changes, were sent a short questionnaire that included space for free comments (take-up: 62%). Three-quarters reported changes. Of these, two-thirds said prospective parents were more likely to say they would disclose, while less than a tenth said prospective parents were less likely do so. Where no changes were noted, this was primarily because the majority of prospective parents had stated their intention to be open even prior to the legal changes. Possible influences on intentions included: the culture within the centre, moves towards openness within the wider society, and parents' lack of confidence regarding how to go about disclosure. Follow-up studies are needed to improve understanding of whether influences on decision making carry through to patterns of actual disclosure; whether involvement in counselling affects outcomes; and whether access to professional assistance at the time of planned disclosure is helpful.

Disclosing Medical Errors to Patients: Attitudes and Practices of Physicians and Trainees

Disclosing errors to patients is an important part of patient care, but the prevalence of disclosure, and factors affecting it, are poorly understood. To survey physicians and trainees about their practices and attitudes regarding error disclosure to patients. Survey of faculty physicians, resident physicians, and medical students in Midwest, Mid-Atlantic, and Northeast regions of the United States. Actual error disclosure; hypothetical error disclosure; attitudes toward disclosure; demographic factors. Responses were received from 538 participants (response rate = 77%). Almost all faculty and residents responded that they would disclose a hypothetical error resulting in minor (97%) or major (93%) harm to a patient. However, only 41% of faculty and residents had disclosed an actual minor error (resulting in prolonged treatment or discomfort), and only 5% had disclosed an actual major error (resulting in disability or death). Moreover, 19% acknowledged not disclosing an actual minor error and 4% acknowledged not disclosing an actual major error. Experience with malpractice litigation was not associated with less actual or hypothetical error disclosure. Faculty were more likely than residents and students to disclose a hypothetical error and less concerned about possible negative consequences of disclosure. Several attitudes were associated with greater likelihood of hypothetical disclosure, including the belief that disclosure is right even if it comes at a significant personal cost. There appears to be a gap between physicians' attitudes and practices regarding error disclosure. Willingness to disclose errors was associated with higher training level and a variety of patient-centered attitudes, and it was not lessened by previous exposure to malpractice litigation.

The Privacy Paradox: Personal Information Disclosure Intentions versus Behaviors

Impelled by the development of technologies that facilitate collection, distribution, storage, and manipulation of personal consumer information, privacy has become a “hot” topic for policy makers. Commercial interests seek to maximize and then leverage the value of consumer information, while, at the same time, consumers voice concerns that their rights and ability to control their personal information in the marketplace are being violated. However, despite the complaints, it appears that consumers freely provide personal data. This research explores what we call the “privacy paradox” or the relationship between individuals’ intentions to disclose personal information and their actual personal information disclosure behaviors.

Making the invisible visible: Fear and disclosure of sexual orientation at work.

Stigma theory was used to examine the fears underlying the disclosure of a gay identity at work. Using a national sample of 534 gay, lesbian, and bisexual employees, this study examined the antecedents that affect the degree of disclosure of a gay identity at work and, for those who had not disclosed, the factors that influence their fears about full disclosure. Employees reported less fear and more disclosure when they worked in a group that was perceived as supportive and sharing their stigma. Perceptions of past experience with sexual orientation discrimination were related to increased fears but to greater disclosure. For those who had not fully disclosed their stigma, the fears associated with disclosure predicted job attitudes, psychological strain, work environment, and career outcomes. However, actual disclosure was unrelated to these variables. The utility of fear of disclosure for understanding processes underlying the disclosure of gay and other invisible stigmatized identities in the workplace is discussed.

Headline earnings per share: financial managers’ perceptions and actual disclosure practices in South Africa

Earnings per share (EPS) is a key ratio which must be disclosed in the financial statements of South African listed enterprises. It is used to compare the performance of an enterprise over time and to compare its performance with that of other enterprises. Financial analysts also use EPS to calculate the price‐earnings (PE) ratio. In South Africa, listed companies are required to disclose three EPS measures, namely basic EPS (BEPS), diluted EPS (DEPS) and headline EPS (HEPS). This article reports on the results of a study of financial managers’ perceptions of the importance of HEPS and the actual disclosure practices relating to HEPS in selected listed companies’ annual reports. This article also reports on financial managers’ perceptions of selected other accounting measures of performance (such as EPS) and other financial indicators not ordinarily found in the annual report (such as the PE ratio), of the importance of EPS measures in general and of headline EPS in particular. The study found support for HEPS, compared to other per share measures, despite misconceptions regarding the objective of HEPS. The study also found that 95% of the selected companies disclosed HEPS together with the required reconciliation. However, half of the companies contravened the headline earnings definition. As a result, approximately one third of all selected companies overstated their HEPS.

Actual Versus Perceived Central Bank Transparency: The Case of the European Central Bank

Central banks have become more and more transparent about their monetary policy making process. In the central bank transparency literature the distinction between actual and perceived transparency is often lacking. However, as perceptions are crucial for the actions of economic agents this distinction matters. We investigate the mismatch between actual and perceived transparency and its relevance by analyzing data of a Dutch household survey on the European Central Bank’s transparency. A discrepancy between actual and perceived transparency exists because of incomplete and incorrect transparency knowledge and other (psychological) factors. We find that respondents with relatively high transparency perceptions are more likely to have more trust in the ECB and better alligned inflation perceptions and expectations. Therefore, it might be beneficial for a central bank to increase transparency perceptions, either by improving its actual disclosure practices or by focusing on its transparency strengths in its communicationpolicy.

Emotional responses of oncologists when disclosing prognostic information to patients with terminal disease: Results of qualitative data from a mailed survey to ASCO members

8520 Background: Prior studies describe physician reluctance to reveal prognostic information to advanced cancer patients (acp), but little data exists describing their actual disclosure practices. Methods: A mailed survey was conducted to assess medical oncologists’ (MOs) self-reported behaviors, beliefs, and attitudes regarding prognostic conversations with terminally ill acp. Following letter pre-notification, surveys were mailed to a systematic sample of 1,222 MOs with U.S. addresses listed in the 2004 ASCO Membership Directory. Surveys contained a $25 gift card. The survey included qualitative questions eliciting emotional responses when communicating prognostic information to acp. Results: 729 surveys were completed and returned (60% response rate) with 654 providing qualitative responses (90%). The median age was 51 (range, 34–80) with male predominance (80%). Practice representation was: 56% (private), 23% (academic-based) and 20% (other active practice). MOs most commonly (47%) expressed negative emotions including sadness, pain, depression, heartache, feelings of loss, guilt, anxiety, stress, and finally discomfort with how their patient might react. They reported these conversations as unhappy, unpleasant, frustrating, and bothersome. They also described them as difficult, hard, exhausting and/or draining. 31% of MOs reported empathy, sympathy, compassion, caring, supportiveness, comfort, or being calm during prognostic disclosure. 14% reported positive feelings including optimism, hope, helpfulness, gratification, reward, or relief. 11% related emotional objectivity, detachment, control, or neutrality. Finally, MOs responses listed younger acp age as being a determinant of negative emotions. Conclusions: Negative emotions are more commonly described by MOs when asked to discuss their feelings toward prognostic disclosure. A lesser proportion described objectivity or a lack of emotion. Some related positive emotions. This qualitative data provides a greater explanation for MOs reluctance to disclose prognostic information. No significant financial relationships to disclose.

Informing patients about cancer in Nepal: what do people prefer?

Introduction: Traditionally, doctors in Nepal do not discuss a diagnosis of malignancy with their patient. Instead, discussion is more likely to take place with family members, who then filter the information that the patient receives. This study aims to quantify the amount of actual disclosure of a cancer diagnosis that takes place, through a survey of patients admitted for hospice care, and to compare this with preferences regarding cancer disclosure from a survey of the general population. Objectives: (a) To determine what proportion of patients, referred for hospice care with advanced cancer, who were aware of their disease and prognosis. (b) To determine the attitude among the public toward disclosure of information of a diagnosis of malignancy, if they or a close relative were to develop the disease. (c) To observe if educational attainment impacts on issues related to disclosure of a cancer diagnosis. Method: (a) Prospective survey of patients with cancer admitted to ‘Hospice Nepal’ over a one-year period, recording details of how much patients knew of their diagnosis. (b) Survey of the general population in and around the Kathmandu valley, with a questionnaire asking the following two questions: If you were diagnosed with cancer would you like to be informed of your cancer? If a close relative was diagnosed with cancer would you like them to be informed of their cancer? Results: A survey of the 96 patients admitted to ‘Hospice Nepal’ over the one-year study period showed that 19 (20%) of the patients had knowledge of both their disease and the stage of the disease; 16 (17%) knew that they had cancer but did not know about their disease progression or prognosis; 61 (63%) were unaware of the nature, seriousness or prognosis of their disease. A survey of the general population in Kathmandu showed 204 (80%) of the 256 respondents wanted to be informed if they were diagnosed with cancer, even if it was incurable; 44 (17%) wanted to be informed of such a diagnosis only if it was curable; and 8 (3%) did not want to be informed of such a diagnosis at all. Conclusion: In Nepal, there is a clear disparity between what patients would like to be told should they develop cancer, and what patients with cancer know about their disease. In the Asian context, it is not unusual to be advised that western practices of disclosure are inappropriate, yet this study, conducted in a very non-western culture, shows that the patient’s wish to know about their illness is a desire which can transcend cultural and ethnic differences.

The Sea (review)

Reviewed by: The Sea Jason Gray The Sea by John BanvilleAlfred A. Knopf, 2005, 195 pp., $23 Irish writer John Banville's newest novel, The Sea, was recently awarded the 2005 Man Booker Prize, for which his fantastic novel The Book of Evidence was shortlisted in 1989. The Sea is narrated by Max Morden, recently widowed art historian, who has traveled back to a place he calls Ballyless, a seaside village where he spent summers as a youth. Banville's last six novels all use the first person, and his various narrators are haunted by their pasts, though Max does not have truly dark secrets, as did the narrator of Banville's last book, Shroud. The Sea is a book that requires, but rewards, patient reading. The plot is in a very minor key. The present narration of Max's return to the Cedars, now a bed and breakfast, once home of the Grace family, along with the narration of his life with his late wife, is one part of the story, and the distant past, one particular summer with the Graces, is the other part—and the bulk—of the novel. That long past involves a dark coming-of-age/love triangle that Banville reveals slowly. Max becomes enraptured with the Grace family, who are able to rent an actual house for the summer, as opposed to the "chalet" (a rustic cabin) that his family takes. Max is ashamed of his social place and longs to be a part of the Graces' world, and so he befriends them. When the [End Page 162] Graces see him with his parents, he thinks, "Had it been in my power I would have cancelled my shaming parents on the spot, would have popped them like bubbles of sea spray, my fat little bare-faced mother and my father whose body might have been made of lard." He is at first taken with Mrs. Connie Grace, but later his attentions shift to Chloe, the daughter his own age. She is always accompanied by her twin brother, the mute "malignant sprite" Myles, and they are minded by Rose. Max feels singled out by the gods when the Graces finally take him in. They are like the Greek mythology that he devours for its erotic stories as well as for its order—Max is one for social order. The gods also represent a childlike fantasy world: his bliss with his first love and her family, which is repeated in the future when he is accepted into the society of his wife, Anna, and her father. This, and their tragic endings, are what link the two narratives. The tragedy from his youth, though not explicitly foretold, is seen coming from a long way off. The intentional effect of so few things actually happening in the novel is that what does happen is thrown into great relief. The slightest touch has enormous resonance, and the climax of the novel is all the more striking. The way the story is told does create some slight problems, however. Since Max knows certain things—for instance, that the Miss Vavasour he rents a room from in the old Grace house is really Rose—there is no reason why he ought not to tell us that. There are hints, yes, but the actual disclosure at the end feels a little like a trick. It's a small miscue in an otherwise wonderfully executed book. Banville has become one of English literature's master stylists. Baroque, to say the least, he is able to balance long, suspended sentences with clarity and beauty. For instance, Max says of Chloe, "As I walked meekly behind her swaggering figure, my fond and fondly anguished gaze fixed on the blond comma of hair at the nape of her neck or the hairline cracks in the porcelain backs of her knees, I felt as if I were carrying within me a phial of the most precious and delicately combustible material." The depth of character explored in this book, the intricacies of Max's romantic obsessions and his nasty foibles, make The Sea a worthy accomplishment, if not Banville's highest achievement. Copyright © 2006 The Curators of the...

Disclosure and Secrecy in Adolescent–Parent Relationships

Beliefs about parents' legitimate authority and adolescents' obligations to disclose to parents and actual disclosure and secrecy in different domains were examined in 276 ethnically diverse, lower middle-class 9th and 12th graders (Ms=14.62 and 17.40 years) and their parents (n=249). Adolescents were seen as more obligated to disclose prudential issues and less obligated to disclose personal than moral, conventional, and multifaceted issues; parents viewed adolescents as more obligated to disclose to parents than adolescents perceived themselves to be. Adolescents disclosed more to mothers than to fathers, particularly regarding personal issues, but mothers overestimated girls' disclosure. Greater trust, perceived obligations to disclose, and, for personal issues, more parental acceptance and psychological control predicted more disclosure and less secrecy.