Search PubMed⌕ Search

SEARCH · Search PubMed

Results for “Genetic Privacy”

Search indexed PubMed citations on genomics, clinical trials, systematic reviews and public health. Explore titles, authors and supplied subject terms, then open the PubMed record.

Quote a phrase for an exact phrase match. Source license links do not imply unrestricted reuse.

At least 91 records · Page 5Linked to original sources
PubMed2002

Genetic testing in the workplace: the employer's coin toss.

A toss of the coin by the modern-day employer reveals two options regarding genetic testing in the workplace. The employer may choose to take advantage of increasingly precise, available, and affordable genetic testing in order to ascertain the genetic characteristics--and deficiencies--of its employees. This outcome exposes the employer to a vast array of potential litigation and liability relating to the Americans with Disabilities Act, the Fourth Amendment, Title VII of the Civil Rights Act, and state legislation designed to protect genetic privacy. Alternatively, the employer may neglect to indulge in this trend of genetic testing and may face liability for employer negligence, violations of federal legislation such as OSHA regulations, and increased costs associated with insuring the health of genetically endangered employees. In the rapidly developing universe of genetic intelligence, the employer is faced with a staggering dilemma.

Carpal Tunnel Syndrome↗
PubMed2001

Genetic information privacy and discrimination.

As rapidly evolving technologies provide more information about disease-related genes in human DNA, there is an increase in genetic screening for predisposition for a variety of diseases. Knowledge of genetic information provides significant benefits and drawbacks. Potential misuse of genetic information, particularly by employers or insurance companies, is a realistic possibility. Genetic information is often attainable via electronic medical information databases, heightening concerns that these data will be accessed by third parties and used for discriminatory purposes. Many lawmakers believe that potential harm specifically resulting from misuse of genetic information is so great that legal protection is required.

Confidentiality↗
PubMed1998

U.S. Senate Bill 422: the Genetic Confidentiality and Nondiscrimination Act of 1997.

On March 11, 1997, Senator Pete Domenici introduced U.S. Senate Bill 422, the Genetic Confidentiality and Non-Discrimination Act of 1997. The bill specifies that "existing legal protections for genetic information are inadequate to ensure genetic privacy and to prevent genetic discrimination." The first stated purpose of the bill is "to define the circumstances under which DNA samples may be collected, stored, and analyzed and genetic information may be collected, stored, analyzed, and disclosed." The bill reinforces statutes already passed in 19 states that guarantee patients certain rights of control over their own personal genetic information (Congressional Record, S2141). This bill fundamentally changes the mechanism whereby molecular biologists acquire tissue, and defines new obligations between researchers and human subjects. Even if this bill is not passed in its present form, it appears inevitable that legislation with a similar intent will soon emerge. Any such legislation will carry the full weight and penalties of law. Because many current research practices may violate these proposed new regulations, researchers should understand the provisions of S. 422. Furthermore, it is crucial that researchers understand the bill now, before it becomes law, because this may be their last opportunity to lobby for any modifications of the bill.

Confidentiality↗
PubMed2002

Law and regulation of retained organs: the ethical issues.

Organ retention has been with us for millennia. Walk into virtually any cathedral and many a church in Europe and you will find an array of retained organs or tissue, allegedly originally the property of assorted saints, or even of God, and almost certainly collected without proper informed consent and retained in less than secure conditions. In our own time the complexities of organ collection, retention and use have proliferated. The events at Alder Hey Children's Hospital and the debates about the ethics of biobanking all over the world have dramatically highlighted the complexity, the difficulty and the moral importance of these issues. Some of these issues have to do with the question of who can give permission for or consent to such removal and retention. Other issues involve consideration of whose rights or interests are engaged when cadaver organs and tissue are removed and retained, just what in particular is the nature, extent and force of those rights or interests, and how they are to be balanced against other moral considerations. These questions are the subject of this paper. We will not, however, here be concerned with the issues of genetic privacy, the security of genetic information.

Advance Directives↗
PubMed2000

Morality of the privacy of genetic information: possible improvements of procedures.

Genetic screening has opened up new paths for progress in preventive and curative medicine, and will probably progressively increase its positive contribution in the future. Rules and regulations have been established attempting to protect the donors' rights and to avoid damage to the donor and to others. Present day regulations seem unable to prevent the occurrence of serious problems and possible dangers. These are: 1. Ownership of genetic information and right to determine to whom it is divulged. 2. Direct emotional damage to individuals (mainly young persons expecting late-onset catastrophes) by having the information. 3. Damage caused by unsought for findings. 4. Restriction of transfer of information to the stated aim. 5. Right to release information important for public safety. The aim of this article is to propose that the donor's ownership of the information be abolished and that a board should decide to whom the genetic information should be given. An alternative solution is to leave the decisions regarding to whom genetic information should be divulged in the hands of the donor and his physician, controlled by an institutional review board.

Computer Security↗
PubMed1999

Efforts to regulate the collection and use of genetic information.

Public fascination with and support for genetic medicine is complicated by a deeply held fear that genetic information will be used by third parties (eg, insurers, employers, school systems) in ways that will harm the individuals from whom it was derived. Since the mid-1990s there has been much state and some federal legislative activity to address 2 closely related issues: the maintenance of genetic privacy and the prevention of genetic discrimination. These laws have had to confront several challenging questions such as what constitutes a genetic test, is genetic information qualitatively different from other medical information, and is there a means to distinguish between the two. In general the state laws are not well crafted. I will argue that a far more preferable policy is to draft a global, comprehensive medical records privacy law and to develop a model statute that defines the role of predictive genetic information in insurance underwriting. Concerns over misuse of genetic information also pose major issues for the conduct of genomic research. Among those I discuss are ownership of the DNA sample, significant changes in the scope of consent that must precede the decision to volunteer as a subject in genomic research, the reuse of long-archived samples, the challenges to intellectual property rights that flow from research, and the rise of the doctrine of community consent.

Confidentiality↗
PubMed2001

Anonymous predictive testing for Huntington's disease in the United States.

The widespread use of a predictive genetic test for Huntington's disease (HD) since 1993 has brought to the forefront issues regarding genetic privacy. Although the possibility of anonymous genetic testing has been discussed, its use in the United States has not been described previously. We review the experiences of 11 genetics specialists with anonymous predictive testing for HD. We found that more men than women requested anonymous testing, for reasons that more often related to personal privacy than to insurance or discrimination concerns. A number of approaches to anonymity were used, and genetics specialists varied in the degree to which they were comfortable with the process. A number of legal, medical, and practical questions are raised, which will require resolution if anonymous testing is to be performed with a greater frequency in the future.

Anonyms and Pseudonyms↗
PubMed1998

Genetic testing for renal diseases: medical and ethical considerations.

Advances in understanding the genetic basis of renal disorders will soon allow for the clinical use of genetic diagnostic testing. In this article, we review renal diseases with a known genetic basis and the current methods available for genetic testing. We then examine the potential medical indications for genetic testing, with special attention to autosomal dominant polycystic kidney disease (ADPKD). Because clinicians will be faced with patients considering genetic testing, we review the ethical considerations regarding genetic testing for renal diseases, recent genetic privacy legislation, and the special role genetic testing may have in transplantation. We conclude with a review of the necessary elements of informed consent, which provides the ethical foundation for patients deciding about genetic testing with the assistance of their physicians.

Chromosome Mapping↗
PubMed1999

DNA databanks: law enforcement's greatest surveillance tool?

All fifty states have laws requiring the collection of DNA samples from certain classes of criminals. Genetic profiles are gleaned from these samples and entered into DNA databanks, after which they then can be accessed by law enforcement personnel and others. DNA forensic technologies can be used to identify criminal offenders, but they can also be used in ways that reveal health and other personal information about the target and even about his or her relations. Moreover, the rapid introduction of ever-changing types of DNA forensic techniques creates a potential for error. Such errors may wrongly implicate some individuals for a crime and may wrongly exculpate others. This Article examines weaknesses in state DNA databanking laws regarding the protection of genetic privacy and imposition of quality assurance mechanisms and suggests policies which state legislatures should incorporate into the state DNA databanking scheme.

Criminal Law↗
PubMed2001

Impact of human genome project on medical practice.

The sequence of bases on all 23 pairs of human chromosomes has been nearly unravelled. Nearly 3.1 billion nucleotide bases were sequenced using the clone based approach of Human Genome Project Consortium and the shotgun approach of Celera. There appear to be about 30,000 genes, which are however more complex. Human genes seem to have been transferred over evolution from bacteria. Further progress is likely in identifying genes and their function, in development of DNA chips or arrays to identify genes, expanded field of protomics or the study of detailed structure and function of proteins. Pharmacogenomics is possible to develop designer drugs depending on the individuals genetic make-up. Projected drawbacks from availability of genetic data of individuals include loss of privacy, genetic determinism and the risk of high insurance premia, conflict about patenting and ownership.

Forecasting↗
PubMed2001

Ignorance, information and autonomy.

People have a powerful interest in genetic privacy and its associated claim to ignorance, and some equally powerful desires to be shielded from disturbing information are often voiced. We argue, however, that there is no such thing as a right to remain in ignorance, where a fight is understood as an entitlement that trumps competing claims. This does not of course mean that information must always be forced upon unwilling recipients, only that there is no prima facie entitlement to be protected from true or honest information about oneself. Any claims to be shielded from information about the self must compete on equal terms with claims based in the rights and interests of others. In balancing the weight and importance of rival considerations about giving or withholding information, if rights claims have any place, rights are more likely to be defensible on the side of honest communication of information rather than in defence of ignorance. The right to free speech and the right to decline to accept responsibility to take decisions for others imposed by those others seem to us more plausible candidates for fully fledged rights in this field than any purported right to ignorance. Finally, and most importantly, if the right to autonomy is invoked, a proper understanding of the distinction between claims to liberty and claims to autonomy show that the principle of autonomy, as it is understood in contemporary social ethics and English law, supports the giving rather than the withholding of information in most circumstances.

Confidentiality↗