Ethics Of Genetic Testing Research Articles

Personalised Nutrition Technologies and Innovations: A Cross-National Survey of Registered Dietitians

Background: Commercial technology-enabled personalised nutrition is undergoing rapid growth, yet its uptake in dietetics practice remains low. This survey sought the opinions of dietetics practitioners on personalised nutrition and related technologies to understand the facilitators and barriers to its application in practice. Method: A cross-section of registered dietitians were recruited in the USA, UK, Australia, Canada, Israel, Mexico, Portugal, Spain, and South Africa. The questionnaire sought their views on the risks of genetics technology, the ethics of genetic testing, the usefulness of new personalised nutrition technologies, entrepreneurism, and the perceived importance of new technologies to dietetics. Validated scales were included to assess personality (Big Five) and self-efficacy (NGSEI). The survey was available in English, Spanish, and Portuguese. Regression analyses were performed to identify factors associated with the integration of nutrigenetic testing into practice, and to identify factors associated with the perceived importance of bio-information, and mobile technology to dietetics practice. Results: A total of 323 responses (response rate 19.7%) were analysed. Dietetics practitioners who had integrated personalised nutrition technology into practice perceived technologies to be less risky (p = 0.02), biotechnology to be more important (p < 0.01), and professional skills to be less important (p = 0.04) than those who had not. They were also more likely to see themselves as entrepreneurs (p < 0.01) and to perceive lower risks to be associated with technology (p < 0.01). Practitioners of nutrigenetics were lower on neuroticism (p < 0.01) and higher on self-efficacy (p < 0.01), extraversion (p < 0.01), and agreeableness (p < 0.01). A higher perceived importance of biotechnology to dietetics practice was associated with higher perceived usefulness of omics tests (p < 0.01). Perceived importance of information technology was associated with the perceived importance of biotechnology (p < 0.01). Mobile technology was perceived as important by dietitians with the highest level of education (p = 0.02). Conclusions: For dietitians to practice technology-enabled personalised nutrition, training will be required to enhance self-efficacy, address the risks perceived to be associated with new technologies, and instil an entrepreneurial mindset.

An empirical assessment of the short-term impacts of a reading of Deborah Zoe Laufer's drama Informed Consent on attitudes and intentions to participate in genetic research

ABSTRACTObjective: This study assessed the short-term impact of the play “Informed Consent” by Deborah Zoe Laufer (a fictionalized look at the controversy over specimens collected from the Havasupai Tribe for diabetes research in 1989) on perceptions of trust, willingness to donate biospecimens, and attitudes toward harm and privacy among the medical and undergraduate students, faculty, and the public in the Intermountain West. Methods: Surveys were administered before and after a staged reading of the play by professional actors. Survey items included the short form Trust in Medical Researchers, and single-item questions about group identity, ethics of genetic testing in children, and willingness to donate biospecimens. In addition, respondents were given the option to answer open-ended questions through e-mail. Results: Out of the 481 who attended the play, 421 completed both the pre and post surveys, and 166 participants completed open-ended questions online approximately 1 week after the play. Across all participants, there were significant declines for trust in medical researchers and for the survey item “is it ethical for investigators to test children for adult onset diseases” (p < .001 for both) following the play. There was a significant increase in agreement to improve group identity protections (p < .001) and there were no differences on willingness to donate biospecimens to research (p = .777). Qualitative data provided extensive contextual data supporting these perspectives. Discussion: This is one of the first studies to document short-term impacts of a theatrical performance on both attitudes and behavioral intentions toward research ethics and clinical research participation. Future research should continue to explore the impact of theatrical performances among public and investigators on the ethical issues and complexities in clinical research.

The ethics of genetic testing and research in sport

The human genome was first mapped in 2003 at a cost of US$2.7 billion and took 13 years to complete. The same procedure can be conducted in 2017 for less than US$1000 over a period of three days. Rapid acceleration of genetic science over the past decade has opened doorways of opportunity to understand the genetic basis of disease and health in humans. Genetic science has created the possibility of ‘personalised medicine’ where patients can understand their individual susceptibility to disease, the likelihood that they will or won’t have side-effects from particular medications and the likelihood that they will or won’t respond to specific forms of chemotherapy. Medical practitioners use genetic testing in daily practice to diagnose conditions such as haemochromatosis, coeliac disease, cystic fibrosis and Huntington's disease. In sport there are particular ethical challenges related to genetic testing and research. Costs associated with genetic testing and research are falling rapidly while availability and access to testing is increasing. Direct to consumer testing companies are springing up around the world, allowing the opportunity for individuals to have their DNA sequenced and advice provided on the basis of that sequencing, without any involvement of a medical practitioner. Unscrupulous operators are purporting to provide advice to athletes, coaches and sporting organisations based on information which is not supported by current scientific evidence. These companies often have sophisticated and aggressive marketing strategies. It is likely that in the near future sport will face integrity scandals involving unethical use of genetic information and non-evidence based advice being given to athletes and others. It is important that general practitioners, physiotherapists, sports scientists and sports physicians understand the potential dangers and pitfalls of becoming involved with direct to consumer companies for the purposes of genetic testing. Genetic research also poses specific challenges for health professionals in sport. Athletes are potentially vulnerable in terms of their relationship with coaches and sporting organisations who may wish the athlete to participate in genetic research. The rights of athletes need to be protected when they are providing samples of genetic material for analysis. This presentation will highlight the ethical issues need to be considered by general practitioners, physiotherapists, sports scientists and sports physicians considering involvement in genetic testing or genetic research projects.

Ethics of genetic testing and research in sport: a position statement from the Australian Institute of Sport

As Australia's peak high-performance sport agency, the Australian Institute of Sport (AIS) has developed this position statement to address the implications of recent advances in the field of genetics and...

Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy.

How has the interface between genetics and assisted reproduction technology (ART) evolved since 2005? The interface between ART and genetics has become more entwined as we increase our understanding about the genetics of infertility and we are able to perform more comprehensive genetic testing. In March 2005, a group of experts from the European Society of Human Genetics and European Society of Human Reproduction and Embryology met to discuss the interface between genetics and ART and published an extended background paper, recommendations and two Editorials. An interdisciplinary workshop was held, involving representatives of both professional societies and experts from the European Union Eurogentest2 Coordination Action Project. In March 2012, a group of experts from the European Society of Human Genetics, the European Society of Human Reproduction and Embryology and the EuroGentest2 Coordination Action Project met to discuss developments at the interface between clinical genetics and ART. As more genetic causes of reproductive failure are now recognized and an increasing number of patients undergo testing of their genome prior to conception, either in regular health care or in the context of direct-to-consumer testing, the need for genetic counselling and PGD may increase. Preimplantation genetic screening (PGS) thus far does not have evidence from RCTs to substantiate that the technique is both effective and efficient. Whole genome sequencing may create greater challenges both in the technological and interpretational domains, and requires further reflection about the ethics of genetic testing in ART and PGD/PGS. Diagnostic laboratories should be reporting their results according to internationally accepted accreditation standards (ISO 15189). Further studies are needed in order to address issues related to the impact of ART on epigenetic reprogramming of the early embryo. The legal landscape regarding assisted reproduction is evolving, but still remains very heterogeneous and often contradictory. The lack of legal harmonization and uneven access to infertility treatment and PGD/PGS fosters considerable cross-border reproductive care in Europe, and beyond. This continually evolving field requires communication between the clinical genetics and IVF teams and patients to ensure that they are fully informed and can make well-considered choices. Funding was received from ESHRE, ESHG and EuroGentest2 European Union Coordination Action project (FP7 - HEALTH-F4-2010-26146) to support attendance at this meeting.

A Race Still Unfinished

[Breast Cancer Special Issue Index][1] Few scientific endeavors captured as much public interest as the race to identify BRCA1 , a gene responsible for inherited predisposition to breast and ovarian cancers. The search culminated in a 1994 Science paper reporting the isolation of BRCA1 by positional cloning.[*][2] Isolation of the related cancer predisposition gene BRCA2 followed soon after.[†][3] Twenty years later, the BRCA genes continue to make headlines, sparking a Supreme Court decision on the legality of gene patenting and intense debates on the ethics of genetic testing. ![Figure][4] CREDIT: ANNE WESTON/CANCER RESEARCH UK/VISUALS UNLIMITED INC. In this special section of Science , expert contributors retrace the long and tortuous path leading to the mapping and identification of the BRCA1 gene; discuss the ways in which BRCA mutation status has been integrated into the clinical management of patients in high-risk families; and highlight the role of the BRCA proteins in preserving the structural and numerical integrity of chromosomes throughout the cell cycle, a function that may explain their tumor suppressor activity. Science 's News team explores many of the issues that have arisen since the discovery of the BRCA genes. Advances in molecular medicine have brought new options for treatment and prevention, driving down mortality rates in wealthy countries. But in poor countries, shut out from these advances, mortality rates remain disproportionately high. Widespread breast screening has led to early detection and a new dilemma: whether to aggressively treat noncancerous lesions that may never become invasive or whether to “watch and wait.” Since 1994, dozens more genes have been found that increase a woman's risk of hereditary breast cancer, but by how much is uncertain, confounding already complicated issues in genetic testing and counseling. Throughout this explosion of research, advocacy groups have been a powerful force in boosting funding and shaping the agenda, and they continue pushing for increasingly ambitious, some say unrealistic, goals. Clearly much more needs to be done—both more research and better ways to get existing treatments to women who need them. The discovery of the BRCA genes was transformative. More than a million women and men have been tested for BRCA1 and BRCA2 mutations in the past 20 years, and there is no doubt that the test has saved lives. But mutations in these two genes account for only 5 to 10% of breast cancer cases in the general population, and worldwide, breast cancer remains the most common and most deadly cancer in women. Is it time to start a new race? [1]: http://www.sciencemag.org/site/special/breastcancer/index.xhtml [2]: #fn-1 [3]: #fn-2 [4]: pending:yes

Current issues in medically assisted reproduction and genetics in Europe: research, clinical practice, ethics, legal issues and policy. European Society of Human Genetics and European Society of Human Reproduction and Embryology.

In March 2005, a group of experts from the European Society of Human Genetics and European Society of Human Reproduction and Embryology met to discuss the interface between genetics and assisted reproductive technology (ART), and published an extended background paper, recommendations and two Editorials. Seven years later, in March 2012, a follow-up interdisciplinary workshop was held, involving representatives of both professional societies, including experts from the European Union Eurogentest2 Coordination Action Project. The main goal of this meeting was to discuss developments at the interface between clinical genetics and ARTs. As more genetic causes of reproductive failure are now recognised and an increasing number of patients undergo testing of their genome before conception, either in regular health care or in the context of direct-to-consumer testing, the need for genetic counselling and preimplantation genetic diagnosis (PGD) may increase. Preimplantation genetic screening (PGS) thus far does not have evidence from randomised clinical trials to substantiate that the technique is both effective and efficient. Whole-genome sequencing may create greater challenges both in the technological and interpretational domains, and requires further reflection about the ethics of genetic testing in ART and PGD/PGS. Diagnostic laboratories should be reporting their results according to internationally accepted accreditation standards (International Standards Organisation – ISO 15189). Further studies are needed in order to address issues related to the impact of ART on epigenetic reprogramming of the early embryo. The legal landscape regarding assisted reproduction is evolving but still remains very heterogeneous and often contradictory. The lack of legal harmonisation and uneven access to infertility treatment and PGD/PGS fosters considerable cross-border reproductive care in Europe and beyond. The aim of this paper is to complement previous publications and provide an update of selected topics that have evolved since 2005.

The Ethics of Genetic Testing in Psychiatry

A discussion of ethics concerns in psychiatric genetics focusing on predictive genetic testing, psychosocial consequences for patients, effects on family and communities, and the ethics of some emerging technologies.

Ethics of Genetic Testing Being Examined

Ethics of Genetic Testing Being Examined

The Ethics of Genetic Testing: Is More Always Better?

The Ethics of Genetic Testing: Is More Always Better?

Lay Representations of Genetic Disease, and Predictive Testing

As research in human genetics advances, genes for familial forms of cancer and heart disease will continue to be identified. The implication of such findings is that at-risk individuals will be offered a predictive genetic test. How do individuals make such decisions and what information do they need to make informed choices? Richards (1993) has argued that the first step in understanding and helping people to make these decisions is to investigate lay beliefs of genetics. This study examined illness representations of genetic disease, and predictive testing in a sample of 20 educated lay people. Through content analysis of open-ended interviews, we discovered that individuals have limited knowledge of late-onset genetic disorders and predictive testing. Most of the sample identified genetic diseases that manifest in childhood, and were more familiar with prenatal testing. They did not mention any treatment options for genetic disorders, which may indicate that lay people are more deterministic about diseases with a genetic component. Finally, they consistently raised concerns about the ethics of genetic testing and research. The implications of our findings for the provision of information in a genetic testing situation are discussed.

Caught in the middle again: professional ethical considerations in genetic testing for health risks.

Genotyping tests for molecular mutations associated with clinical syndromes increasingly allow clinicians to identify health risks before clinical problems occur, sometimes making prevention possible. The clinical use of these tests, however, can create moral problems for families and serious health policy challenges for communities. Those issues, in turn, complicate the professional ethics of genetic testing and counseling. Investigators working with families in gene-identification studies have already encountered these complications in the research setting and their experiences may help in the development of a clinical ethic for genetic testing. In addition to questions about the predictive significance of particular genotypes, three other sets of ethical considerations are becoming important to professional decision-making about genetic testing: the psycho-social impact of testing, the patient's privileges with respect to testing, and the potential for effective prevention following testing. Underlying all these considerations are basic lessons from the research setting on how clinicians should interpret genetic testing for patients, given the heavily deterministic meanings that they have been taught thus far.

Ethics of Genetic Testing

Ethics of Genetic Testing