The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An ‘ethic of care’ interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.     

Disclosure of Huntington's disease to family members: the dilemma of known but unknowing parties

Predictive genetic testing presents unique issues in the legal and ethical debate concerning disclosure of information within the physician-patient relationship. A duty to disclose information to family members has been found when the disclosure is likely to result in the ability to mitigate the damaging effects of the disease. When evaluating the situation where a individual is at risk of Huntington's disease, the analysis must be different, as shown in this paper, and necessitates an ethical and legal examination of the consequences of receipt of the information on family members, those known but unknowing parties who are at risk of inheriting a genetic disease. This paper analyzes the potential legal duty of a physician to disclose or withhold genetic information from the family members of patients. Existing statutes governing genetic information do not directly address the interests of family members. Courts that have ruled on the duty to disclose medical or genetic information have analyzed these issues using traditional concepts of tort law. Yet the situation presented by Huntington's disease is unique and demands a different framework for analysis, given the late onset and lack of curative or ameliorative treatment. This paper also analyzes the ethical standards to be invoked when considering violating the privacy of a patient or a family member. The principles of autonomy and self-determination of family members are considered, versus the risk of harm and the privacy interest in not knowing potentially devastating information.     

Design and Implementation of Website Information Disclosure Assessment System

Internet application technologies, such as cloud computing and cloud storage, have increasingly changed people’s lives. Websites contain vast amounts of personal privacy information. In order to protect this information, network security technologies, such as database protection and data encryption, attract many researchers. The most serious problems concerning web vulnerability are e-mail address and network database leakages. These leakages have many causes. For example, malicious users can steal database contents, taking advantage of mistakes made by programmers and administrators. In order to mitigate this type of abuse, a website information disclosure assessment system is proposed in this study. This system utilizes a series of technologies, such as web crawler algorithms, SQL injection attack detection, and web vulnerability mining, to assess a website’s information disclosure. Thirty websites, randomly sampled from the top 50 world colleges, were used to collect leakage information. This testing showed the importance of increasing the security and privacy of website information for academic websites.     

Ambiguity in Social Network Data for Presence,Sensitive-Attribute,Degree and Relationship Privacy Protection

Maintaining privacy in network data publishing is a major challenge. This is because known characteristics of individuals can be used to extract new information about them. Recently, researchers have developed privacy methods based on k-anonymity and l-diversity to prevent re-identification or sensitive label disclosure through certain structural information. However, most of these studies have considered only structural information and have been developed for undirected networks. Furthermore, most existing approaches rely on generalization and node clustering so may entail significant information loss as all properties of all members of each group are generalized to the same value. In this paper, we introduce a framework for protecting sensitive attribute, degree (the number of connected entities), and relationships, as well as the presence of individuals in directed social network data whose nodes contain attributes. First, we define a privacy model that specifies privacy requirements for the above private information. Then, we introduce the technique of Ambiguity in Social Network data (ASN) based on anatomy, which specifies how to publish social network data. To employ ASN, individuals are partitioned into groups. Then, ASN publishes exact values of properties of individuals of each group with common group ID in several tables. The lossy join of those tables based on group ID injects uncertainty to reconstruct the original network. We also show how to measure different privacy requirements in ASN. Simulation results on real and synthetic datasets demonstrate that our framework, which protects from four types of private information disclosure, preserves data utility in tabular, topological and spectrum aspects of networks at a satisfactory level.     

The Disclosure of Genetic Information: A Human Research Ethics Perspective

Increasing emphasis on genetic research means that growing numbers of human research projects in Australia will involve complex issues related to genetic privacy, familial information and genetic epidemiology. The Office of Population Health Genomics (Department of Health, Western Australia) hosted an interactive workshop to explore the ethical issues involved in the disclosure of genetic information, where researchers and members of human research ethics committees (HRECs) were asked to consider several case studies from an ethical perspective. Workshop participants used a variety of approaches to examine the complex ethical issues encountered, but did not consistently refer to the values and principles outlined in the National Statement on Ethical Conduct in Human Research (NHMRC 2007) or apply rational ethical approaches. Overall, the data suggested that both researchers and HREC members may benefit from further education and support regarding the application of ethical frameworks to the issues encountered in genetic research.     

Disclosure of personal medical information: differences among parents and affected adults for genetic and nongenetic conditions

Protecting the confidentiality of medical information has been an issue of great interest in the fields of bioethics, public policy, and law. Few empirical studies have addressed patient experiences and attitudes toward disclosure of private medical information in multiple contexts such as health insurance, employment, and the family. Furthermore, it is unclear whether differences exist in experiences and attitudes about privacy between those living with a serious medical condition versus those who have a child with a medical condition. The study sought to determine whether attitudes and experiences related to medical privacy and confidentiality differ between affected adults and parents of affected children. Interviews were conducted with 296 adults and parents of children with sickle cell disease (SCD), cystic fibrosis (CF), or diabetes mellitus (DM). This cross-sectional study collected data regarding their experiences, attitudes, and beliefs concerning medical privacy and confidentiality. Multinomial logistic regression analysis was conducted on quantitative data. Qualitative analysis was conducted on data from open-ended response items. Parents disclose their child's diagnosis to others more often than affected adults disclose their own disease status. Parents are less likely than affected adults to regret their disclosure, to hope others do not find out, to have been pressured to share information, and to be asked about their disease by employers. Affected adults express greater concern about disclosure, a greater prevalence and greater fear of discrimination, and experience greater pressure from family members to disclose. Clinicians and researchers working with these populations should consider these differences in privacy and disclosure. Further study is necessary to examine the implications of these differences in attitudes and experiences concerning insurance, employment, and social interactions among persons with these conditions.     

Societal problems in human and medical genetics

The applications of human and medical genetics raise many societal and ethical problems. This paper deals with a variety of such issues posed by current and future developments in genetic counseling, genetic screening, prenatal and predictive diagnosis, and gene therapy. The promise and problems of behavioral genetics are discussed. Problems of privacy, decision making, societal pressures, stigmatization, and informed consent to genetic study are raised. Use of genetic data by insurance companies or other public groups is discussed. The rapid unfolding of genetic information affecting human health and disease is producing difficult dilemmas. New problems are likely to surface, but human ingenuity and rationality is likely to find just and compassionate solutions in most settings.     

A Statistical Approach to Provide Individualized Privacy for Surveys

In this paper we propose an instrument for collecting sensitive data that allows for each participant to customize the amount of information that she is comfortable revealing. Current methods adopt a uniform approach where all subjects are afforded the same privacy guarantees; however, privacy is a highly subjective property with intermediate points between total disclosure and non-disclosure: each respondent has a different criterion regarding the sensitivity of a particular topic. The method we propose empowers respondents in this respect while still allowing for the discovery of interesting findings through the application of well-known inferential procedures.     

Underlying ambiguities in genetic privacy legislation

Advances in genetic testing and research are creating increasing concern regarding genetic privacy. Current and proposed federal and state legislation has failed to provide adequate protection due to confusion over the meaning of privacy, inconsistency in the definition of genetic information, and lack of clarity with regard to the role of insurers in a market driven healthcare environment. Drawing on examples of current and proposed legislation, this paper explores these ambiguities with a view toward future health policy alternatives.     

Protecting genetic privacy

This article outlines the arguments for and against new rules to protect genetic privacy. We explain why genetic information is different to other sensitive medical information, why researchers and biotechnology companies have opposed new rules to protect genetic privacy (and favour anti-discrimination laws instead), and discuss what can be done to protect privacy in relation to genetic-sequence information and to DNA samples themselves.     

Blockchain-based federated learning methodologies in smart environments

Blockchain technology is an undeniable ledger technology that stores transactions in high-security chains of blocks. Blockchain can solve security and privacy issues in a variety of domains. With the rapid development of smart environments and complicated contracts between users and intelligent devices, federated learning (FL) is a new paradigm to improve accuracy and precision factors of data mining by supporting information privacy and security. Much sensitive information such as patient health records, safety industrial information, and banking personal information in various domains of the Internet of Things (IoT) including smart city, smart healthcare, and smart industry should be collected and gathered to train and test with high potential privacy and secured manner. Using blockchain technology to the adaption of intelligent learning can influence maintaining and sustaining information security and privacy. Finally, blockchain-based FL mechanisms are very hot topics and cut of scientific edge in data science and artificial intelligence. This research proposes a systematic study on the discussion of privacy and security in the field of blockchain-based FL methodologies on the scientific databases to provide an objective road map of the status of this issue. According to the analytical results of this research, blockchain-based FL has been grown significantly during these 5 years and blockchain technology has been used more to solve problems related to patient healthcare records, image retrieval, cancer datasets, industrial equipment, and economical information in the field of IoT applications and smart environments.

     

Professional and personal attitudes about access and confidentiality in the genetic testing of children: a pilot study

The ability to perform predictive genetic testing of children raises ethical concerns regarding whether and when to test and the disclosure of results. Semi-structured interviews with a convenience sample of pediatricians (12) and geneticists (13) were conducted to see how they would react to parental requests for predictive genetic testing of their children, and their attitudes about testing their own children. We also asked about disclosure attitudes and practices for their patients' relatives and within their own families. Respondents would provide predictive genetic testing for most conditions, yet were less likely to seek this information about their own children. Respondents believed it was very important for patients to share some types of genetic information with relatives, and were directive in their counseling about intrafamilial disclosure, especially within their own families. Although respondents would almost never breach patient confidentiality, many would breach confidentiality within their own families. Health care professionals distinguish between their professional and personal roles with regard to issues of access and confidentiality in predictive testing of children. They are willing to provide greater access and more confidentiality for their patients than within their own families.     

Disclosure of genetic information obtained through research

The rapid expansion of information and knowledge of genetics has implications for the question of whether, and under what circumstances, information discovered in the course of genetic research should be conveyed to research participants and/or their relatives. The aim of this paper is to propose an ethically defensible solution to a specific case example illustrating this problem. To do this we reviewed the literature to find answers to the following three questions: (1) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to research participants? (2) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research to the relatives of research subjects? and (3) What do current regulations, guidelines, and commentary say about the disclosure of genetic risk information obtained through research about former research participants who are now deceased? Our conclusion is that current U.S. federal guidelines governing the use of human subjects in research, as well as much of the current literature, do not adequately address the familial dimension inherent in genetic research, are virtually silent on the issue of sharing information of relevance to family members, and do not protect the deceased. It is our belief that this omission needs to be corrected and that explicit guidance on this issue needs to be provided to institutional review boards and researchers alike.     

The HIPAA privacy rule and bioterrorism planning, prevention, and response

Effective bioterrorism planning, prevention, and response require information sharing between various entities, ranging from public health authorities and health-care workers to national security and law enforcement officials. While the source of much information exchanged may be nonidentifiable, many entities legitimately need access to personally identifiable health information (or "protected health information" [PHI]) in planning for and responding to a bioterrorism event. The HIPAA Privacy Rule allows for essential exchanges of health data during a public health emergency while protecting against unnecessary disclosures of PHI. In the event of a bioterrorist attack, the Privacy Rule allows covered entities to disclose PHI without individual authorization in the following instances: (1) for treatment by health-care providers, (2) to avert a serious threat to health or safety, (3) to public health authorities for public health purposes, (4) to protect national security, (5) to law enforcement under certain conditions, and (6) for judicial or administrative proceedings. Despite these favorable disclosure provisions, some privacy challenges remain. The flow of PHI may be slowed by misunderstandings of the Privacy Rule's accounting requirement. In addition, in a bioterrorism scenario, nontraditional entities may find themselves acting as health-care providers, triggering Privacy Rule provisions. Finally, the potential for de facto disclosures of individuals' disease or exposure status increases where conspicuous treatment methods, isolation, or quarantine are implemented without additional measures to protect privacy. Understanding the Privacy Rule's impact on bioterrorism planning and response ensures that various entities can conduct their activities with needed information while still protecting individual privacy.     

Experiences of Genetic Risk: Disclosure and the Gendering of Responsibility

The question of ‘who owns genetic information‘ is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices.     

Company disclosure and consumer perceptions of the privacy implications of direct-to-consumer genetic testing

This study examines the way direct-to-consumer genetic testing (DTCGT) companies communicate privacy information and how consumers understand privacy implications of DTCGT. We first conducted an analysis of DTCGT websites to determine what information they provide regarding the treatment of consumer information and samples. 86 companies offered DTCGT services that could be purchased online from Canada. We then surveyed 415 consumers (180 had purchased, 235 considered but did not purchase DTCGT). While most websites had some privacy information, few provided sufficient information for consumers to make informed purchase decisions. Nearly half of participants reported reading the company’s privacy policy and many felt they received enough information about privacy implications, but their expectations were generally not consistent with company practices. The most common expectation was that the company would share results only with them and destroy their sample after testing. We discuss these issues regarding privacy expectations in the context of DTCGT.     

Narrative Identity in Third Party Reproduction: Normative Aspects and Ethical Challenges

In the last few decades, assisted reproduction has introduced new challenges to the way people conceive and build their families. While the numbers of donor-conceived (DC) individuals have increased worldwide, there are still many controversies concerning access to donor information. Is there a fundamental moral right to know one’s genetic background? What does identity in DC families mean? Is there any relationship between identity formation and disclosure of genetic origins? These questions are addressed by analysing core regulatory discourse (ethical recommendations and codes of practice). This analysis shows that the notion of narrative identity is suitable for defining and answering these questions. This review analyses the meaning of resemblance in DC families and the way donors are selected following affinity-ties and discusses disclosure strategies and agreements. As a preliminary conclusion, it could be said that, in the field of third-party reproduction, knowing about the donor conception significantly contributes towards the development of a narrative identity and also serves as a moral basis for the child’s right to know.     

Factors determining dissemination of results and uptake of genetic testing in families with known BRCA1/2 mutations

BACKGROUND: Uptake of genetic testing remains low, even in families with known BRCA1 and BRCA2 (BRCA1/2) mutations, despite effective interventions to reduce risk. We report disclosure and uptake patterns by BRCA1/2-positive individuals to at-risk relatives, in the setting of no-cost genetic counseling and testing. METHODS: Relatives of BRCA1/2-positive individuals were offered cost-free and confidential genetic counseling and testing. If positive for a BRCA1/2 mutation, participants were eligible to complete a survey about their disclosure of mutation status and the subsequent uptake of genetic testing by at-risk family members. RESULTS: One hundred and fifteen of 142 eligible individuals responded to the survey (81%). Eighty-eight (77%) of those surveyed disclosed results to all at-risk relatives. Disclosure to first-degree relatives (FDRs) was higher than to second-degree relatives (SDRs) and third-degree relatives (TDR) (95% vs. 78%; p < 0.01). Disclosure rates to male versus female relatives were similar, but reported completion of genetic testing was higher among female versus male FDRs (73% vs. 49%; p < 0.01) and SDRs (68% vs. 43%; p < 0.01), and among members of maternal versus paternal lineages (63% vs. 0%; p < 0.01). Men were more likely than women to express general difficulty discussing positive BCRA1/2 results with at-risk family members (90% vs. 70%; p = 0.03), while women reported more emotional distress associated with disclosure than men (48% vs. 13%; p < 0.01). DISCUSSION: We report a very high rate of disclosure of genetic testing information to at-risk relatives. However, uptake of genetic testing among at-risk individuals was low despite cost-free testing services, particularly in men, SDRs, and members of paternal lineages. The complete lack of testing among paternally related at-risk individuals and the lower testing uptake among men signify a significant barrier to testing and a challenge for genetic counselors and physicians working with high-risk groups. Further research is necessary to ensure that family members understand their risk and the potential benefits of genetic counseling.     

Corporate environmental performance,environmental information disclosure,and financial performance: Evidence from China

As pollution emitters and energy users, firms are important causes of environmental problems, making it increasingly vital for them to strengthen their environmental management and information disclosure policies. However, firms doubt whether it pays to be green and whether it is worthwhile to disclose their environmental information, and there are hot debates on these questions in the literature. This paper analyzes the relationships among corporate environmental performance, environmental information disclosure, and financial performance in China, which witnessed rapid growth at the price of environmental degradation. With 950 observations from 475 Chinese listed companies between 2013 and 2014, we find a U-shaped nonlinear relationship between corporate environmental performance and environmental disclosure, an insignificant relationship between environmental performance and financial performance, and a negative relationship between environmental disclosure and financial performance, which is different from most findings in developed countries. The aforementioned results imply that Chinese firms have few motivations to disclose environmental information or improve environmental performance; therefore, mandatory disclosure of environmental information is necessary, and proper environmental policy should be made to punish environmental violations and encourage better environmental performance.     

Disclosure is Inadequate as a Solution to Managing Conflicts of Interest in Human Research

Disclosure is a common response to conflicts of interest; it is intended to expose the conflict to scrutiny and enable it to be appropriately managed. For disclosure to be effective the receiver of the disclosure needs to be able to use the information to assess how the conflict may impact on their interests and then implement a suitable response. The act of disclosure also creates an expectation of self-regulation, as the person with the conflicting interests will be mindful of their own potential biases and aware that their decisions may be monitored. This article discusses some of the problems of relying on disclosure as a solution to address conflicts of interest in research, including the added complexities around institutional conflicts of interest. The case of Dan Markingson illustrates these issues and highlights the vulnerable position relying on disclosure as a solution leaves research participants in.