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Results for “Genetic Privacy”

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At least 343 records · Page 19Linked to original sources
PubMed2003

Genetic laboratory practices related to testing of the GJB2 (Connexin-26) gene in the United States in 1999 and 2000.

Given the rapidly growing area of molecular genetic laboratory testing, we sought to assess changing issues over a 2-year period of time pertaining to the availability of testing for GJB2 mutations associated with non-syndromic hearing loss. Laboratory assessments carried out by telephone interviews with directors or other key personnel revealed variations among laboratories in informed consent practices, evaluation of test requests for appropriateness, and the reporting of results. From 1999 to 2000, referral patterns shifted as did sources for reimbursement, policies regarding evaluation of incoming test requests, and reporting procedures. We propose that these results reflect changes occurring as a result of a new test moving from the research to the clinical phase.

Connexin 26↗
PubMed2004

Racial and ethnic variations in knowledge and attitudes about genetic testing.

This study was designed to shed light on whether differences in utilization of genetic testing by African-Americans, Latinos, and non-Hispanic Whites are due primarily to different preferences, or whether they instead reflect other values and beliefs or differential access. It explores the values, attitudes, and beliefs of African-Americans, Latinos, and non-Hispanic Whites with respect to genetic testing by means of a telephone survey of representative samples of these three groups. The study finds clear evidence that Latinos and African-Americans are, if anything, more likely to express preferences for both prenatal and adult genetic testing than White respondents. At the same time, they hold other beliefs and attitudes that may conflict with, and override, these preferences in specific situations. African-Americans and Latinos are also less knowledgeable about genetic testing than non-Hispanic Whites, and they are less likely to have the financial resources or insurance coverage that would facilitate access to testing.

Black or African American↗
PubMed2004

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.

Genetic Counseling↗
PubMed1992

Hearing on the possible uses and misuses of genetic information.

In summary, I will reiterate the five points I would like to leave with you today: First, the biological revolution has extraordinary power to do good. As long as the use of our new genetic knowledge is guided by the traditional ideals of the healing professions--to help improve the human condition without doing harm--we can expect real benefits to come of it. Second, however, we need to prepare for the fact that, like all powerful tools, genetic information can be misused and abused. As I hope to have illustrated, NIH has the will and ability to work with the American public and the scientific community in preparing for the responsible use of genetic information for now and the future. To date, the best example of that will is the precedent-setting work being conducted in concert with the human genome program through our ELSI program. Third, as a part of that work, it will be imperative to continue to protect the voluntary nature of genetic services. The rights of people to determine for themselves whether or not to pursue genetic information about themselves must be defended, even from the forced choices that discriminatory social practices may create. Fourth, in order to allow those who choose to do so to benefit from our new genetic tools, discrimination based on genotype must be prohibited as a matter of basic civil rights. And finally, in the bright light of the Human Genome Project and its ELSI program, it is important not to let genetics eclipse the important ethical, legal and social issues that attend other biomedical advances. It is the purpose of NIH's new center for science policy studies to illuminate this broader view of the road ahead. Thank you. I will be happy to answer any questions you might have.

Biomedical Research↗
PubMed2025

Privacy-preserving framework for genomic computations via multi-key homomorphic encryption.

MOTIVATION: The affordability of genome sequencing and the widespread availability of genomic data have opened up new medical possibilities. Nevertheless, they also raise significant concerns regarding privacy due to the sensitive information they encompass. These privacy implications act as barriers to medical research and data availability. Researchers have proposed privacy-preserving techniques to address this, with cryptography-based methods showing the most promise. However, existing cryptography-based designs lack (i) interoperability, (ii) scalability, (iii) a high degree of privacy (i.e. compromise one to have the other), or (iv) multiparty analyses support (as most existing schemes process genomic information of each party individually). Overcoming these limitations is essential to unlocking the full potential of genomic data while ensuring privacy and data utility. Further research and development are needed to advance privacy-preserving techniques in genomics, focusing on achieving interoperability and scalability, preserving data utility, and enabling secure multiparty computation. RESULTS: This study aims to overcome the limitations of current cryptography-based techniques by employing a multi-key homomorphic encryption scheme. By utilizing this scheme, we have developed a comprehensive protocol capable of conducting diverse genomic analyses. Our protocol facilitates interoperability among individual genome processing and enables multiparty tests, analyses of genomic databases, and operations involving multiple databases. Consequently, our approach represents an innovative advancement in secure genomic data processing, offering enhanced protection and privacy measures. AVAILABILITY AND IMPLEMENTATION: All associated code and documentation are available at https://github.com/farahpoor/smkhe.

Computer Security↗
PubMed1998

The management of genetic origins: secrecy and openness in donor assisted conception in Israel and elsewhere.

Donor assisted conception provides new opportunities for achieving parenthood but at the same time raises issues of secrecy, anonymity, and the management of the offspring's genetic origins. As with adoption, the child's right to a genetic identity is at stake. The first part of this paper examines bio-psychosocial evidence indicating that maintaining secrecy and anonymity regarding genetic parents may be detrimental to the well-being of the donor offspring, the donor, and the nurturing, social parents. The second part discusses different approaches to the disclosure of genetic origins. The third part presents the case of Israel, as reflected mainly in the Report of the Israeli Ministry of Justice (1994). The paper shows that the Committee, yielding to the medical profession in the country, preferred the interests of the adults involved in donor assisted conception to those of the offspring and made no sincere attempts to protect the child's basic right to genetic identity. In doing so, it turned its back on the well established policy of openness in the field of adoption and on the emerging trend to similar openness in donor assisted conception in other countries.

Adoption↗
PubMed1998

Sharing genetic origins information in donor assisted conception: views from licensed centres on HFEA donor information form (91) 4.

Section 31 of the Human Fertilization and Embryology Act 1990 permits people born as a result of licensed treatments provided in the UK to seek certain information about their genetic origins held on the Human Fertilization and Embryology Authority (HFEA) Register of Information. The precise nature of such information is to be specified in Regulations that have yet to be determined by the Secretary of State. The Register comprises data submitted to the Authority by licensed centres on HFEA Donor Information Form (91) 4. This paper reports on a survey of views of licensed centres concerning the adequacy of this form and centres' experiences of gathering information from donors. The survey shows that centres' experiences vary considerably, and the authors argue that there is a case for the sharing of centres' experiences and dissemination of effective strategies. The paper further discusses the nature of information that might become available to individuals seeking information from the HFEA. While requests for non-identifying information concerning the donor cannot be made prior to 2010, any information made available then is inevitably dependent on current practice in centres. The authors conclude that current variability in practice does not best serve the interests of donor offspring who may seek information about their genetic origins.

Attitude↗
PubMed1992

The right to genetic information: some reflections on Dutch developments.

New developments in genetics are rapidly spreading over the Western World. The standards of clinical practice differ however according to local value- and health-care systems. In this article a short survey is given of Dutch developments in this field. An effort is made to explain the philosophical and ethical background of Dutch policy by concentrating on autonomy, responsibility and the right not to know.

Beneficence↗