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PubMed1993

Privacy rules for DNA databanks. Protecting coded 'future diaries'.

In privacy terms, genetic information is like medical information. But the information contained in the DNA molecule itself is more sensitive because it contains an individual's probabilistic "future diary," is written in a code that has only partially been broken, and contains information about an individual's parents, siblings, and children. Current rules for protecting the privacy of medical information cannot protect either genetic information or identifiable DNA samples stored in DNA databanks. A review of the legal and public policy rationales for protecting genetic privacy suggests that specific enforceable privacy rules for DNA databanks are needed. Four preliminary rules are proposed to govern the creation of DNA databanks, the collection of DNA samples for storage, limits on the use of information derived from the samples, and continuing obligations to those whose DNA samples are in the databanks.

Civil Rights↗

PubMedDate not supplied

[The hospitalized terminal cancer patient and privacy: patient needs and the perception on the part of the professional nurse].

The perception of privacy in a sample of 43 oncology patients admitted to cremona Hospital was evaluated with an ad hoc questionnaire administered by nursing students. The same questionnaire was completed by the nurse responsible for the patient and results were thereafter compared. The questionnaire, of 13 items, explored 4 domains of privacy: environment, physical care, communication with relatives, communication with care providers. Patients and nurses were asked to score each question from 0 (not important) to 3 (very important). Situations which involved modesty-physical care and communication-socialization were perceived as most important for privacy. Areas perceived very important for privacy by the patient received a very high score from the nurses as well.

Adult↗

PubMed1997

Privacy effects on self-reported drug use: interactions with survey mode and respondent characteristics.

This chapter examines the impact of interview privacy on self-reported illicit drug use. In 1991, interviews were completed with an urban-suburban sample of 2,417 adults aged 18 to 45. Results show that the presence of third parties during the interview significantly influences respondents' willingness to reveal illicit drug use. Among married respondents, presence of a spouse resulted in higher reporting of illicit drug use, while the presence of adults other than the spouse had a consistent negative effect on drug use reports. A parent's presence during the interview significantly reduced respondents' willingness to report illicit drug use. The pattern of findings suggests that the direction of effects due to third party presence is linked to two factors: the extent of the third party's knowledge of the information requested, and the degree of personal stake the third party may have in the respondent's answers. The differential impact of privacy by interview mode was also examined. Tests of interactions between privacy and interview mode failed to support the hypothesis that the use of self-administered answer sheets reduces privacy effects compared with interviewer-administered interviews.

Adolescent↗

PubMed2004

Medical privacy and the disclosure of personal medical information: the beliefs and experiences of those with genetic and other clinical conditions.

There has been heightened legislative attention to medical privacy and to protections from genetic discrimination, without large-scale studies to document privacy concerns or analysis of whether experiences differ by whether the condition is genetic (defined here as a single-gene disorder) or non-genetic. To determine whether experiences regarding privacy, disclosure, and consequences of disclosure differ by whether one's medical condition is genetic, we conducted a descriptive study with one-time, structured quantitative and qualitative interviews. We interviewed approximately 100 adults or parents of children with each of the following medical conditions: sickle cell disease, cystic fibrosis, diabetes, and HIV, and 200 adults with or at risk for breast cancer or colon cancer. The percentages of the total 597 respondents experiencing positive or negative consequences of disclosure and the degree to which experiences differed by whether the condition was genetic were the outcomes of interest. Seventy-four percent were glad and 13% regretted others knew about their condition; these findings did not differ significantly by genetic vs. non-genetic condition. Reports of job and health insurance discrimination were not uncommon for the overall study population (19 and 27%, respectively) but were more likely among those with genetic conditions (30 and 37%, respectively). Legislation and other policy-making should target the needs of persons with all conditions and not focus exclusively on genetic discrimination, given that experiences and concerns generally do not differ based on the genetic etiology of the condition.

Adolescent↗

PubMed1996

Privacy and the Human Genome Project.

The Human Genome Project has raised many issues regarding the contributions of genetics to a variety of diseases and societal conditions. With genetic testing now easily conducted with lowered costs in nonmedical domains, a variety of privacy issues must be considered. Such testing will result in the loss of significant privacy rights for the individual. Society must now consider such issues as the ownership of genetic data, confidentiality rights to such information, limits placed on genetic screening, and legislation to control genetic testing and its applications. There is often a conflict between individual rights to privacy and the need for societal protection.

Confidentiality↗

PubMed2003

Preempting genetic discrimination and assaults on privacy: report of a symposium.

At a symposium in June, 2002, biomedical researchers, clinicians, legal experts, policymakers, and representatives of the insurance industry and the advocacy community gathered to address issues of genetic privacy and discrimination; and to identify research, legal, and policy gaps needing to be filled. They concluded that over the next decade, as more genetic information becomes available and the public becomes more aware of individual risks, concerns about privacy and discrimination will become increasingly important. Documented cases of genetic discrimination are rare and largely anecdotal, yet individuals with genetic conditions harbor significant fears about discrimination. Current laws enacted to protect individuals from workplace and insurance discrimination offer some measure of protection, but leave many unfilled gaps. Moreover, the use of genetic information in potentially discriminatory ways is not limited to employment and insurability. Existing laws do little to protect people seeking life, disability, or long-term care insurance. And the courts have used genetic information in a wide variety of cases including paternity, criminal, and tort (personal injury) cases. Genetic information that might jeopardize an individual's right to privacy may also be obtained in the course of research studies, including through the collection of DNA and tissue samples. The insurance industry, State and Federal agencies, and the advocacy community are all making efforts to address some of these gaps through legislation and education of clinicians, the public, and policy makers.

Employment↗

PubMed2005

From Hippocrates to HIPAA: privacy and confidentiality in emergency medicine--Part II: Challenges in the emergency department.

Part I of this article reviewed the concepts of privacy and confidentiality and described the moral and legal foundations and limits of these values in health care. Part II highlights specific privacy and confidentiality issues encountered in the emergency department (ED). Discussed first are physical privacy issues in the ED, including problems of ED design and crowding, issues of patient and staff safety, the presence of visitors, law enforcement officers, students, and other observers, and filming activities. The article then examines confidentiality issues in the ED, including protecting medical records, the duty to warn, reportable conditions, telephone inquiries, media requests, communication among health care professionals, habitual patient files, the use of patient images, electronic communication, and information about minor patients.

Confidentiality↗

PubMed2004

Privacy, privatization, and the politics of patronage: ethnographic challenges to penetrating the secret world of Middle Eastern, hospital-based in vitro fertilization.

In recent years, in vitro fertilization (IVF) has spread around the globe, including to the Middle East. Privacy, privatization, and the politics of patronage are all key issues affecting anthropological research in Middle Eastern hospital-based IVF clinics. IVF-seeking patients generally desire privacy, even total secrecy, when pursuing these treatments, due to cultural issues of stigmatization, particularly regarding male infertility. Thus, ethical issues surrounding the informed consent process are of prime importance. Furthermore, privatization of medical services in the Middle East has left patients--and anthropologists--with few choices other than private IVF clinic settings in which to pursue treatment and research. Both the ethos of patient privacy and medical privatization affect the ability of anthropologists to "penetrate" the secret world of IVF. Permission to conduct ethnography in private hospital IVF clinics may be difficult to obtain without the help of highly motivated physician patrons, who are willing to recruit their private IVF patients for ethnographic interviewing. This article provides a personal account of some of these challenges as faced by a medical anthropologist during a 15-year career of hospital-based IVF research in the Middle East.

Anthropology, Cultural↗

PubMed2005

Dimensions of privacy in palliative care: views of health professionals.

This paper explores the dimensions of privacy evident in the views of practice of health professionals in different inpatient palliative care settings. Eighty-eight semi-structured interviews were conducted with doctors, nurses and pastoral carers at 12 Australian regional and metropolitan locations. Transcribed interviews were coded and discursively content analysed. Privacy was one category that emerged in the transcript analysis. Results showed the necessity of attending to the physical, psycho-social and moral dimensions of privacy in the provision of palliative care that respects dignity, autonomy and supportive social relationships.

Attitude of Health Personnel↗

PubMed2001

Privacy: a review of the literature.

The concept of privacy is used in many disciplines and is recognised as one of the important concepts also in nursing. In this review, a description about the perspectives and dimensions of the concept will be made and empirical studies in the area will be analysed. Perspectives include units experiencing privacy, desired-achieved state, and reactiveness. Dimensions are divided into physical, psychological, social and informational. In the empirical studies, the concept of the privacy has mainly been studied in hospital organisations using the physical dimension. The concept needs further clarification in future.

Confidentiality↗

PubMed2002

Legal and ethical issues in neuroimaging research: human subjects protection, medical privacy, and the public communication of research results.

Humans subjects research entails significant legal and ethical obligations. Neuroimaging researchers must be familiar with the requirements of human subjects protection, including evolving standards for the protection of privacy and the disclosure of risk in "non-therapeutic" research. Techniques for creating veridical surface renderings from volumetric anatomical imaging data raise new privacy concerns, particularly under the federal medical privacy regulation. Additionally, neuroimaging researchers must consider their obligation to communicate research results responsibly. The emerging field of neuroethics should strive to raise awareness of these issues and to involve neuroimaging researchers in the legal, ethical, and policy debates that currently surround human subjects research.

Brain↗

PubMed1999

Alternatives for protecting privacy while respecting patient care and public health needs.

This paper begins with a discussion of the value of privacy, especially for medical records in an age of advancing technology. I then examine three alternative approaches to protection of medical records: reliance on governmental guidelines, the use of corporate self-regulation, and my own third hybrid view on how to maintain a presumption in favor of privacy with respect to medical information, safeguarding privacy as vigorously and comprehensively as possible, without sacrificing the benefits of new information technology in medicine. None of the three models I examine are unproblematic, yet it is crucial to weigh the strengths and weaknesses of these alternative approaches.

Access to Information↗

PubMed2004

Genomic research and data-mining technology: implications for personal privacy and informed consent.

This essay examines issues involving personal privacy and informed consent that arise at the intersection of information and communication technology (ICT) and population genomics research. I begin by briefly examining the ethical, legal, and social implications (ELSI) program requirements that were established to guide researchers working on the Human Genome Project (HGP). Next I consider a case illustration involving deCODE Genetics, a privately owned genetic company in Iceland, which raises some ethical concerns that are not clearly addressed in the current ELSI guidelines. The deCODE case also illustrates some ways in which an ICT technique known as data mining has both aided and posed special challenges for researchers working in the field of population genomics. On the one hand, data-mining tools have greatly assisted researchers in mapping the human genome and in identifying certain "disease genes" common in specific populations (which, in turn, has accelerated the process of finding cures for diseases tha affect those populations). On the other hand, this technology has significantly threatened the privacy of research subjects participating in population genomics studies, who may, unwittingly, contribute to the construction of new groups (based on arbitrary and non-obvious patterns and statistical correlations) that put those subjects at risk for discrimination and stigmatization. In the final section of this paper I examine some ways in which the use of data mining in the context of population genomics research poses a critical challenge for the principle of informed consent, which traditionally has played a central role in protecting the privacy interests of research subjects participating in epidemiological studies.

Computational Biology↗

PubMed2001

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.

Employment↗

PubMed1998

Research, ethics and privacy: the limits of knowledge.

This paper considers the need for personal privacy within the context of epidemiological research. It concludes that privacy can be protected by early anonymization and aggregation of personal health data without prejudicing the viability of a research project. During the period before anonymization, however, a secure legal framework is necessary to prevent unauthorized access to potentially sensitive information. Within such a framework ethical codes need to be identified and monitored by an appropriate Local Research Ethics Committee (or a Multicentre Ethics Committee acting on behalf of a number of local committees). Present arrangements within the health care system in the UK for the handling of such data remain very unsatisfactory and put patient privacy at risk.

Epidemiology↗

PubMed2001

Medical privacy and research.

Medical records are increasingly kept in electronic form. The existence of large medical databases raises new questions about privacy and control over that information. When records exist in a form that can easily be shared with others, there are legitimate privacy concerns. This paper argues that this fear is not properly a privacy issue, but rather concerns the viability of social norms that govern the doctor-patient relationship and the use of medical information that is obtained within that relationship. When medical information is used for research purposes, the information is transformed into data elements and is no longer about the individuals. Information obtained either in the ordinary course of providing medical care or in the course of conducting research studies for which individuals have given their informed consent does not require further consent to be used as data in research files as long as it is not individually identifiable.

Access to Information↗

PubMed2025

PRISM: privacy-preserving rare disease analysis using fully homomorphic encryption.

MOTIVATION: Rare diseases affect millions of people worldwide, yet their genomic foundations remain poorly understood due to limited patient data and strict privacy regulations, such as the General Data Protection Regulation (GDPR) (https://gdpr.eu/tag/gdpr/) in March 2025. These restrictions can hinder the collaborative analysis of genomic data necessary for uncovering disease-causing variants. RESULTS: We present PRISM, a novel privacy-preserving framework based on fully homomorphic encryption (FHE) that facilitates rare disease variant analysis across multiple institutions without exposing sensitive genomic information. To address the challenges of centralized trust, PRISM is built upon a Threshold FHE scheme. This approach decentralizes key management across participating institutions and ensures no single entity can unilaterally decrypt sensitive data. Our method filters disease-causing variants under recessive, dominant, and de novo inheritance models entirely on encrypted data. We propose two algorithmic variants: a multiplication-intensive (MUL-IN) approach and an addition-intensive (ADD-IN) approach. The ADD-IN algorithms minimize the number of costly multiplication operations, enabling up to a 17× improvement in runtime for recessive/dominant filtering and 22× for de novo filtering, compared to MUL-IN methods. While ADD-IN produces larger ciphertexts, efficient parallelization via SIMD and multithreading allows it to handle millions of variants in reasonable time. To the best of our knowledge, this is the first study that utilizes FHE for privacy-preserving rare disease analysis across multiple inheritance models, demonstrating its practicality and scalability in a single-cloud setting. AVAILABILITY AND IMPLEMENTATION: The source code and the data used in this work can be found in https://github.com/mdppml/PRISM.git.

Computer Security↗

PubMed2025

Privacy-hardened and hallucination-resistant synthetic data generation with logic-solvers.

MOTIVATION: Machine-generated or synthetic data is a valuable resource for training artificial intelligence algorithms, evaluating rare workflows, and sharing data under stricter data legislations. However, current statistical and deep learning methods struggle with large data volumes, are prone to hallucinating scenarios incompatible with reality, and seldom quantify privacy meaningfully. RESULTS: Here, we introduce Genomator, a logic solving approach (SAT solving), which efficiently produces private and realistic representations of the original data. We demonstrate the method on genomic data, which arguably is the most complex and private information. We benchmark Genomator against state-of-the-art methodologies (Markov generation, Wasserstein Generative Adversarial Network and Conditional Restricted Boltzmann Machines), demonstrating a 40%-530% accuracy improvement and 57%-172% higher privacy. Genomator is also 3-100 times more efficient, making it the only tested method that scales to whole genomes. We show the universal trade-off between privacy and accuracy, and use Genomator's tuning capability to cater to all applications along the spectrum, from provable private representations of sensitive cohorts, to datasets with indistinguishable pharmacogenomic profiles. Demonstrating the production-scale generation of tuneable synthetic genomes hold great potential for balancing underrepresented populations in medical research and advancing global data exchange. AVAILABILITY AND IMPLEMENTATION: Genomator is available at https://github.com/csiro/genomator.

Algorithms↗