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PubMed1999

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.

Europe↗

PubMed2000

Owning genetic information and gene enhancement techniques: why privacy and property rights may undermine social control of the human genome.

In this article I argue that the proper subjects of intangible property claims include medical records, genetic profiles, and gene enhancement techniques. Coupled with a right to privacy these intangible property rights allow individuals a zone of control that will, in most cases, justifiably exclude governmental or societal invasions into private domains. I argue that the threshold for overriding privacy rights and intangible property rights is higher, in relation to genetic enhancement techniques and sensitive personal information, than is commonly suggested. Once the bar is raised, so-to-speak, the burden of overriding it is formidable. Thus many policy decisions that have been recently proposed or enacted--citywide audio and video surveillance, law enforcement DNA sweeps, genetic profiling, national bans on genetic testing and enhancement of humans, to name a few--will have to be backed by very strong arguments.

Commerce↗

PubMed1991

Privacy and disclosure in medical genetics examined in an ethics of care.

The progress of genetic knowledge magnifies existing ethical problems in medical genetics. Among the most troubling types of problems -- for medicine, patients, and the larger society -- are those of privacy and disclosure. Examples of the range of problems involving privacy and disclosure are: 1) disclosure of false paternity to an unsuspecting husband; 2) disclosure of a patient's genetic make-up to his or her unknowing spouse; 3) disclosure of information, against a patient's wishes, to relatives at genetic risk; 4) disclosure of ambiguous test results; 5) disclosure of adventitious nonmedical information, e.g., fetal sex; and 6) disclosure to institutional third parties, such as employers and insurers....

Attitude↗

PubMed1981

Computers, medical records, and the right to privacy.

Recent advances in computer technology permit the accumulation, analysis, and storage of an unlimited quantity of medical record information, thereby seriously compounding existing controversies surrounding patient confidentiality and privacy. This article surveys both benefits and problems arising from this increased availability of medical records. It examines legal and ethical dilemmas arising from the conflict between the usefulness of patients, in particular their right to privacy. The article suggests guidelines for insuring fair and balanced health information policies.

Codes of Ethics↗

PubMedDate not supplied

Privacy protection: implications for public health researchers.

Recent privacy legislation and other existing controls on medical research in Australia have raised a number of issues for instituional ethics committees and medical researchers. Some legislation, such as the federal electoral laws, has made it increasingly difficult for researchers to engage in community-based case-control studies. One proposal to alleviate this difficulty is to give a body such as the Australian Institute of Health wider access to health information. This proposal is consistent with public opinion regarding privacy in the context of medical research.

Australia↗

PubMed2001

Privacy considerations in the context of an Australian observational database.

Observational databases are increasingly acknowledged for their value in clinical investigation. Australian general practice in particular presents an exciting opportunity to examine treatment in a natural setting. The paper explores issues such as privacy and confidentiality--foremost considerations when conducting this form of pharmacoepidemiological research. Australian legislation is currently addressing these exact issues in order to establish clear directives regarding ethical concerns. The development of a pharmacoepidemiological database arising from the integration of computerized Australian general practice records is described in addition, to the challenges associated with creating a database which considers patient privacy. The database known as 'Medic-GP', presently contains more than 950,000 clinical notes (including consultations, pathology, diagnostic imaging and adverse reactions) over a 5-year time period and relates to 55,000 patients. The paper then details a retrospective study which utilized the database to examine the interaction between antibiotic prescribing and patient outcomes from a community perspective, following a policy intervention. This study illustrates the application of computerized general practice records in research.

Australia↗

PubMed2006

Cancer surveillance and information: balancing public health with privacy and confidentiality concerns (United States).

Rapid advances in informatics and communication technologies are greatly expanding the capacity for information capture and transportation. While these tools can be used for great good, they also offer new opportunities for those who seek to obtain and use information for improper purposes. While issues related to identity theft for financial gain garner the most attention, protection of privacy in public health endeavors such as cancer surveillance is also a significant concern. Some efforts to protect health-related information have had unintended consequences detrimental to health research and public health practice. Achieving a proper balance between measures to protect privacy and the ability to guard and improve public health requires careful consideration and development of appropriate policies, regulations and use of technology.

Confidentiality↗

PubMed2026

Ethical Governance of Open Data Across Biomedical Research, Healthcare, and Public Health: Privacy, Equity, Trust, and Controlled Access.

Open data has become central to biomedical research and public health, but health information is uniquely sensitive and difficult to share responsibly. In this narrative review, open data is considered as a spectrum of health-data sharing arrangements, ranging from public aggregate datasets to controlled-access repositories, federated analysis, and synthetic data. This narrative review synthesizes the scientific and societal rationale for greater openness with the ethical, legal, and governance constraints that shape what "open" can realistically mean in healthcare. We examine how data sharing supports reproducibility, machine learning, and more efficient research, while also enabling public health surveillance and learning health systems. Against these benefits, we analyze privacy and re-identification risks, consent challenges in large-scale secondary use, inequities including data colonialism, and tensions introduced by commercialization. We integrate lessons from prominent case examples spanning pandemic data sharing, genomic initiatives, population registries, patient-led rare disease infrastructures, and regional data spaces. Across these domains, experience suggests that durable progress depends less on unrestricted openness than on calibrated access, privacy-preserving architectures, clear accountability, and sustained public engagement. We conclude by proposing a pragmatic ethical orientation for healthcare open data: treat openness as a spectrum of controlled sharing arrangements, embed equity and reciprocity into governance, and institutionalize trust-building measures that can persist beyond emergencies and political cycles.

Data colonialism↗

PubMed2005

Ethics across the computer science curriculum: privacy modules in an introductory database course.

This paper describes the author's experience of infusing an introductory database course with privacy content, and the on-going project entitled Integrating Ethics Into the Database Curriculum, that evolved from that experience. The project, which has received funding from the National Science Foundation, involves the creation of a set of privacy modules that can be implemented systematically by database educators throughout the database design thread of an undergraduate course.

Curriculum↗

PubMed2005

Protecting patient privacy against unauthorized release of medical images in a group communication environment.

In this paper, we identify and study an important patient privacy protection problem related to medical images. Following Health Insurance Portability and Accountability Act (HIPAA) mandate on privacy protection of patients' medical records, efforts have been devoted to guaranteeing the confidentiality of data and medical images during storage and transmission via an untrustworthy channel. However, to our knowledge, there has not been any effort towards protecting against unauthorized release of images by an authorized recipient. In this paper, we study the problem of tracing illegally distributed medical images in a group communication environment and identify a set of design requirements that must be met. We propose a fingerprint model suitable for many-to-many multicast, that is computationally efficient and scalable in user storage and key update communication. Simulation results also show that our scheme is highly robust to typical medical image processing and collusion attacks, while yielding high quality watermarked images.

Diagnostic Imaging↗

PubMed2004

Protecting patient privacy by quantifiable control of disclosures in disseminated databases.

One of the fundamental rights of patients is to have their privacy protected by health care organizations, so that information that can be used to identify a particular individual is not used to reveal sensitive patient data such as diagnoses, reasons for ordering tests, test results, etc. A common practice is to remove sensitive data from databases that are disseminated to the public, but this can make the disseminated database useless for important public health purposes. If the degree of anonymity of a disseminated data set could be measured, it would be possible to design algorithms that can assure that the desired level of confidentiality is achieved. Privacy protection in disseminated databases can be facilitated by the use of special ambiguation algorithms. Most of these algorithms are aimed at making one individual indistinguishable from one or more of his peers. However, even in databases considered "anonymous", it may still be possible to obtain sensitive information about some individuals or groups of individuals with the use of pattern recognition algorithms. In this article, we study the problem of determining the degree of ambiguation in disseminated databases and discuss its implications in the development and testing of "anonymization" algorithms.

Algorithms↗

PubMed1996

Privacy and security issues in a wide area health communications network.

In 1993 the first national health information service went live in New Zealand, using commercial network services for all communications. This system provides a point of connection for all health personnel, and for those with a legitimate interest in health care information (e.g. insurers): it also provides access to a number of information resources managed on behalf of the government of New Zealand (e.g. index of health care users), as well as to those developed by individual network service providers. Much of the data exchanged across this network is personalised. Since the recipient may not be known personally to the sender, it is vital that the sender has confidence that the recipient will treat personal information according to agreed criteria for privacy. A Code of Practice covering health information was developed under the New Zealand Privacy Act to ensure that the confidence to share confidential data was supported. For large organisations such as hospitals to function efficiently, they need the flexibility to be able quickly to assign user privileges to selected staff without the need for extra paperwork seeking approval from the centre. But the audit trail requires unique identification of the individual undertaking each transaction. This requirement has been addressed. Some of the data moved across the network relates to life-critical issues, e.g. clinical warnings about allergies or serious medical conditions. A failure of communications causing this vital information to be improperly represented in some way on the receivers system could have disastrous consequences. To ensure the integrity of data transfers, user installations have to be certified compliant with standard test scripts before they are authorized for access to these resources.

Accreditation↗

PubMed2000

'Watching' medicine: do bioethicists respect patients' privacy?

Agich has identified 'watching' --the formal or informal observation of the medical setting-- as one of the four main roles of the clinical bioethicist. By an analysis of a case study involving a bioethics student who engaged in watching at an HIV/AIDS clinic as part of his training, I raise questions about the ethical justification of watching. I argue that the invasion of privacy that watching entails makes the activity unacceptable unless the watcher has received prior consent from the patients who are being observed. I conclude that, even though it is important for bioethics students to understand the complexities of actual medical practice, watching should play a prominent role in bioethics education only if the privacy problems in it can be resolved.

Bioethics↗

PubMed2002

Ethical issues in bipolar disorders pedigree research: privacy concerns, informed consent, and grounds for waiver.

Focusing on bipolar disorders research, this article considers ethical issues of informed consent and privacy arising in genetic pedigree research at two stages: the construction of tentative pedigrees to determine family eligibility for study and, subsequently, the enrollment of subjects in and conduct of the family study. Increasing concern to protect the privacy of family members of primary subjects or probands, following ethical controversy over a survey study at Virginia Commonwealth University, has led some researchers and Institutional Review Boards (IRBs) to apply informed consent requirements to those represented on a tentative pedigree at the initial stage of research. This article analyzes the possible benefits, risks, and burdens to prospective subjects of seeking prospective consent for pedigree construction at this initial stage. It argues that the likely risk-benefit ratio favors granting a waiver of consent requirements for this stage of pedigree research and presents grounds for IRBs to grant such a waiver. The article closes by considering particular ethical concerns that should be addressed in the informed consent discussion when enrolling subjects in pedigree studies of bipolar disorder, including concerns about subjects' competence to consent, management of interim and incidental findings, and issues particular to psychiatric research.

Bipolar Disorder↗

PubMed1996

Confidentiality, privacy, and restrictions for computer-based patient records.

The public wants four things from our healthcare system: quality, affordability, security, and access (Taylor 1993). To improve quality and affordability of, and access to, healthcare, we turn to information technology for support. With the increased use of information technology in healthcare, concerns associated with the security of patient records are also increasing. Personal privacy and information technology are on a collision courses with respect to the privacy and confidentiality of computer-based patient medical records.

Computer Security↗

PubMed2026

dGAMLSS: an exact, distributed algorithm to fit Generalized Additive Models for Location, Scale, and Shape for privacy-preserving population reference charts.

MOTIVATION: There is growing interest in estimating population reference ranges across age and sex to better identify atypical clinically-relevant measurements throughout the lifespan. For this task, the World Health Organization recommends using Generalized Additive Models for Location, Scale, and Shape (GAMLSS), which can model non-linear growth trajectories under complex distributions that address the heterogeneity in human populations.Fitting GAMLSS models requires large, generalizable sample sizes, especially for accurate estimation of extreme quantiles, but obtaining such multi-site data can be challenging due to privacy concerns and practical considerations. In settings where patient data cannot be shared, privacy-preserving distributed algorithms for federated learning can be used, but no such algorithm exists for GAMLSS. RESULTS: We propose distributed GAMLSS (dGAMLSS), a distributed algorithm that can fit GAMLSS models across multiple sites without sharing patient-level data. This includes specific considerations for the fitting of smooth functions at varying levels of communication efficiency. We demonstrate the effectiveness of dGAMLSS in constructing population reference charts across clinical, genomics, and neuroimaging settings and show that dGAMLSS is able to reproduce pooled reference charts and inference down to numerical differences. AVAILABILITY AND IMPLEMENTATION: An R package providing examples of the dGAMLSS algorithm, as well as functions for sharing and aggregating site-specific parameters, is available at https://github.com/hufengling/dGAMLSS.

Algorithms↗

PubMed2026

Secure bioinformatics: privacy-preserving federated analytics using homomorphic encryption.

MOTIVATION: Large-scale bioinformatics analyses increasingly require collaboration across multiple cohorts and institutions, yet existing workflows often rely on data co-localization, which is slow, difficult to scale, and raises privacy concerns. We present a privacy-preserving federated analytics framework that enables secure statistical analysis across distributed datasets without transferring raw data, by performing all computations on encrypted data via cryptographic methods. RESULTS: We evaluate the framework by validating polygenic risk scores and conducting meta-analyses on two real-world cohorts. The proposed solution achieves over 99.9% accuracy relative to plaintext analyses, while maintaining scalable runtime performance with increasing data size and number of participating sites. These results demonstrate the feasibility of secure federated analytics for practical bioinformatics applications involving sensitive data.

Computational Biology↗

PubMedDate not supplied

Quality consciousness...auditing for HIPAA Privacy Compliance.

The Health Insurance Portability and Accountability Act (HIPAA) privacy deadline has passed. Now it is essential to comply with the regulations. The stakes are high; therefore, a HIPAA Privacy Compliance Program must be part of an organization's quality initiatives. This article provides guidelines for the challenges of continual program improvement, successful cultural change, and effective monitoring of the existing program. Healthcare organizations will attain compliance goals through internal audits on the processes, policies, and training efforts of their HIPAA program.

Computer Security↗