Ethical Issues in Genetic Research with Infants

2018 ◽  
pp. 155-171
Author(s):  
Erin Rothwell ◽  
Jeffrey R. Botkin
Keyword(s):  
Health Care ◽  
Genetic Testing ◽  
Ethical Issues ◽  
Genetic Research ◽  
Newborn Health ◽  
Research Use ◽  
Whole Genome ◽  
Use Of Data ◽  
The Impact ◽  
Genetic Results

There are a number of ethical issues raised when newborns participate in research. Two examples include genetic testing, and the storage and research use of biospecimens collected from newborns. This chapter highlights a range of ethical, legal, and social implications with these practices. Examples from retention of residual newborn screening bloodspots, use of biospecimens collected from infants in biomedical research, concerns with the use of whole genome sequencing, and challenges of consent during the newborn period are discussed. These issues are explored within the context of newborns who are healthy or newborns faced with an undiagnosed condition. At this time, more research is needed to understand the impact of genomics on newborn health care, the storage and use of data generated from biospecimens, and how genetic results from newborns impact families. Further challenges around consent and parental permission are also discussed.

scholarly journals Ethical Considerations on Pediatric Genetic Testing Results in Electronic Health Records

2020 ◽  
Vol 11 (05) ◽  
pp. 755-763
Author(s):  
Shibani Kanungo ◽  
Jayne Barr ◽  
Parker Crutchfield ◽  
Casey Fealko ◽  
Neelkamal Soares
Keyword(s):  
Genetic Testing ◽  
Best Practices ◽  
Health Care Providers ◽  
Genetic Information ◽  
Ethical Issues ◽  
Interdisciplinary Approach ◽  
Care Providers ◽  
Ethical Considerations ◽  
Electronic Health ◽  
Genetic Results

Abstract Background Advances in technology and access to expanded genetic testing have resulted in more children and adolescents receiving genetic testing for diagnostic and prognostic purposes. With increased adoption of the electronic health record (EHR), genetic testing is increasingly resulted in the EHR. However, this leads to challenges in both storage and disclosure of genetic results, particularly when parental results are combined with child genetic results. Privacy and Ethical Considerations Accidental disclosure and erroneous documentation of genetic results can occur due to the nature of their presentation in the EHR and documentation processes by clinicians. Genetic information is both sensitive and identifying, and requires a considered approach to both timing and extent of disclosure to families and access to clinicians. Methods This article uses an interdisciplinary approach to explore ethical issues surrounding privacy, confidentiality of genetic data, and access to genetic results by health care providers and family members, and provides suggestions in a stakeholder format for best practices on this topic for clinicians and informaticians. Suggestions are made for clinicians on documenting and accessing genetic information in the EHR, and on collaborating with genetics specialists and disclosure of genetic results to families. Additional considerations for families including ethics around results of adolescents and special scenarios for blended families and foster minors are also provided. Finally, administrators and informaticians are provided best practices on both institutional processes and EHR architecture, including security and access control, with emphasis on the minimum necessary paradigm and parent/patient engagement and control of the use and disclosure of data. Conclusion The authors hope that these best practices energize specialty societies to craft practice guidelines on genetic information management in the EHR with interdisciplinary input that addresses all stakeholder needs.

scholarly journals Can the Health-Care System Meet the Challenge of Pandemic Flu? Planning, Ethical, and Workforce Considerations

2007 ◽  
Vol 122 (5) ◽  
pp. 573-578 ◽  
Author(s):  
Peter J. Levin ◽  
Eric N. Gebbie ◽  
Kristine Qureshi
Keyword(s):  
Public Health ◽  
Health Care ◽  
Ethical Issues ◽  
Care Delivery ◽  
Care Staff ◽  
Health Care Staff ◽  
Accurate Information ◽  
The Public ◽  
Health Care Delivery Systems ◽  
The Impact

The federal pandemic influenza plan predicts that 30% of the population could be infected. The impact of this pandemic would quickly overwhelm the public health and health-care delivery systems in the U.S. and throughout the world. Surge capacity for staffing, availability of drugs and supplies, and alternate means to provide care must be included in detailed plans that are tested and drilled ahead of time. Accurate information on the disease must be made available to health-care staff and the public to reduce fear. Spokespersons must provide clear, consistent messages about the disease, including actions to be taken to contain its spread and treat the afflicted. Home care will be especially important, as hospitals will be quickly overwhelmed. Staff must be prepared ahead of time to assure their ability and willingness to report to work, and public health must plan ahead to adequately confront ethical issues that will arise concerning the availability of treatment resources. The entire community must work together to meet the challenges posed by an epidemic. Identification and resolution of these challenges and issues are essential to achieve adequate public health preparedness.

Maintaining Safe Breastfeeding Practices During the COVID-19 Pandemic: An Overview of the Evidence to Inform Clinical Guidelines

2021 ◽  
Vol 40 (3) ◽  
pp. 140-145
Author(s):  
Tiffany Gwartney ◽  
Allyson Duffy
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Best Practice ◽  
Newborn Health ◽  
Care Providers ◽  
Postnatal Transmission ◽  
Breastfeeding Practices ◽  
Evidential Support ◽  
Guidelines And Recommendations ◽  
The Impact

The impact of the COVID-19 pandemic upon the health care landscape has prompted many organizations to revise policies in response to ever-changing guidelines and recommendations regarding safe breastfeeding practices. The application of these professional guidelines into clinical practice is fraught with barriers, inconsistencies, and often-minimal evidential support. Key concerns for health care providers and patients include antenatal versus postnatal transmission, milk transmission, and separation care versus rooming-in, including the subsequent impacts upon breastfeeding and bonding. While SARS-CoV-2 is a novel virus, the volume of literature to support best practice for couplet care continues to be developed at a rapid pace. The benefits of breastfeeding are steeped in evidence and outweigh the potential risk of transmission of COVID-19 from mother to newborn. Health care organizations must continue to seek guidance for policy revision within the ever-growing body of evidence for best practice and evaluate current practices for feasibility during and after hospitalization.

Medical “Gatekeeping” for Psychosocial Research on Serious Illness

2017 ◽  
Vol 28 (3) ◽  
pp. 218-233
Author(s):  
Pam McGrath ◽  
Amandeep Kaur ◽  
Rennette Feracho ◽  
Mary Anne Patton
Keyword(s):  
Health Care ◽  
Health Care Providers ◽  
Ethical Issues ◽  
Psychosocial Health ◽  
Research Process ◽  
Care Providers ◽  
Research Recruitment ◽  
Serious Illness ◽  
Sample Representation ◽  
The Impact

The discussion explores ethical issues associated with medical “gatekeeping” in relation to psychosocial health research associated with serious illness and loss. “Gatekeeping” is defined as the process whereby health-care providers prevent access to eligible patients for research recruitment. The impact of this practice on the research process is explored, including issues of sample representation, selection bias, and wastage of time and resources. The reflection of ethical issues is set in the context of research on clinical empathic responsiveness and accuracy, paternalism, and the ethical principles of autonomy, beneficence, and justice.

scholarly journals Impact of Genetic Testing for Cardiomyopathy on Emotional Well-Being and Family Dynamics: A Study of Parents and Adolescents

2021 ◽  
Vol 14 (4) ◽  
Author(s):  
Priyanka Ahimaz ◽  
Maya Sabatello ◽  
Min Qian ◽  
Aijin Wang ◽  
Erin M. Miller ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Family History ◽  
Family Dynamics ◽  
Predictive Testing ◽  
Well Being ◽  
Family Assessment Device ◽  
Hereditary Cardiomyopathy ◽  
History Of ◽  
The Impact ◽  
Genetic Results

Background: Genetic testing is indicated for children with a personal or family history of hereditary cardiomyopathy to determine appropriate management and inform risk stratification for family members. The implications of a positive genetic result for children can potentially impact emotional well-being. Given the nuances of cardiomyopathy genetic testing for minors, this study aimed to understand how parents involve their children in the testing process and investigate the impact of genetic results on family dynamics. Methods: A survey was distributed to participants recruited from the Children’s Cardiomyopathy Foundation and 7 North American sites in the Pediatric Cardiomyopathy Registry. The survey explored adolescent and parent participants’ emotions upon receiving their/their child’s genetic results, parent-child result communication and its impact on family functionality, using the McMaster Family Assessment Device. Results: One hundred sixty-two parents of minors and 48 adolescents who were offered genetic testing for a personal or family history of cardiomyopathy completed the survey. Parents whose child had cardiomyopathy were more likely to disclose positive diagnostic genetic results to their child ( P =0.014). Parents with unaffected children and positive predictive testing results were more likely to experience negative emotions about the result ( P ≤0.001) but also had better family functioning scores than those with negative predictive results ( P =0.019). Most adolescents preferred results communicated directly to the child, but parents were divided about whether their child’s result should first be released to them or their child. Conclusions: These findings have important considerations for how providers structure genetic services for adolescents and facilitate discussion between parents and their children about results.

Ethical aspects of genetic testing

2018 ◽  
Author(s):  
Frances Flinter
Keyword(s):  
Health Care ◽  
Genetic Testing ◽  
Medical Ethics ◽  
Additional Benefit ◽  
Psychological Effects ◽  
Whole Genome ◽  
Ethical Aspects ◽  
Genetic Tests ◽  
Multiple Tests ◽  
Precise Diagnosis

The increasing availability of genetic tests is transforming health care. Patients can benefit from earlier, more precise diagnosis and sometimes tailor-made treatment; their relatives can be offered pre-symptomatic, predictive tests and carrier tests. Physicians must balance confidentiality with duty to other individuals, and are responsible for using genetic tests for the benefit of patients in an ethical way. An offer of testing must balance potential additional benefit from potential downsides of testing including psychological effects, risk of error, continuing uncertainty, and cost. The ability to do multiple tests on many genes, even to sequence the whole genome, is rapidly approaching, and mainstreaming of tests means that geneticists are not necessarily involved. Further work and thinking needs to inform medical ethics in this area.

Eugenics and its Relevance to Contemporary Health Care

2000 ◽  
Vol 7 (3) ◽  
pp. 205-214 ◽  
Author(s):  
Rachel Iredale
Keyword(s):  
Health Care ◽  
Human Health ◽  
Genetic Information ◽  
Genetic Research ◽  
Theory And Practice ◽  
History Of ◽  
Historical Phenomenon ◽  
The Impact ◽  
Human Genetic Research ◽  
Contemporary Health Care

Recently there has been a revival of interest in the theory and practice of eugenics by both academics and lay people. The ongoing revolution in biology and the increasing ability to acquire genetic information has led to concerns about genetics being used again for sinister eugenic ends. Although the goals behind traditional eugenics - the minimization of disease and the improvement of human health - remain unchanged, the means by which these goals should be achieved have altered significantly. However, in debates about the impact of human genetic research, eugenics is sometimes viewed as a purely historical phenomenon and its relevance to the current situation is minimized. This article outlines the history of the eugenics movement, describes some eugenic practices, and explores why an appreciation of these historical debates is important for nurses.

scholarly journals Enhancing the Impact of Genomics Research in Autism through Integration of Research Results into Routine Care Pathways—A Case Series

2021 ◽  
Vol 11 (8) ◽  
pp. 755
Author(s):  
Iskra Peltekova ◽  
Daniela Buhas ◽  
Lara Stern ◽  
Emily Kirby ◽  
Afiqah Yusuf ◽  
...  
Keyword(s):  
Clinical Care ◽  
Genetic Research ◽  
Case Series ◽  
Routine Care ◽  
Autism Spectrum ◽  
Care Pathways ◽  
Research Results ◽  
Individualized Care ◽  
The Impact ◽  
Genetic Results

The return of genetic results (RoR) to participants, enrolled as children, in autism research remains a complex process. Existing recommendations offer limited guidance on the use of genetic research results for clinical care. We highlight current challenges with RoR and illustrate how the use of a guiding framework drawn from existing literature facilitates RoR and the clinical integration of genetic research results. We report a case series (n = 16) involving the return of genetic results to participants in large genomics studies in Autism Spectrum Disorders (ASD). We outline the framework that guided RoR and facilitated integration into clinical care pathways. We highlight specific cases to illustrate challenges that were, or could have been, resolved through this framework. The case series demonstrates the ethical, clinical and practical difficulties of RoR in ASD genomic studies for participants enrolled as children. Challenges were resolved using pre-established framework to guide RoR and incorporate research genetic results into clinical care. We suggest that optimal use of genetic research results relies on their integration into individualized care pathways for participants. We offer a framework that attempts to bridge the gap between research and healthcare in ASD.

From Ecologyto Base Pairs: Nursing and Genetic Science

2001 ◽  
Vol 3 (1) ◽  
pp. 4-12 ◽  
Author(s):  
Janet K. Williams ◽  
Toni Tripp-Reimer
Keyword(s):  
Health Care ◽  
Human Genome ◽  
Ethical Issues ◽  
Genetic Research ◽  
Phenotypic Expression ◽  
Gene Mutations ◽  
Care Practice ◽  
Nursing Research ◽  
Research Programs ◽  
Apply Genetic

With the mapping of the human genome has come the opportunity for nursing research to explore topics of concern to the maintenance, restoration, and attainment of genetic-related health. Initially, nursing research on genetic topics originated primarily from physical anthropology and froma clinical, diseasefocused perspective. Nursing research subsequently focused on psychosocial aspects of genetic conditions for individuals and their family members. As findings emerge from current human genome discovery, new programs of genetic nursing research are originating froma biobehavioral interface, ranging fromthe investigations of the influence of specific molecular changes on gene function to social/ethical issues of human health and disease. These initiatives reflect nursing’s response to discoveries of gene mutations related to phenotypic expression in both clinical and community-based populations. Genetic research programs are needed that integrate or adapt theoretical and methodological advances in epidemiology, family systems, anthropology, and ethics with those from nursing. Research programs must address not only populations with a specific disease but also communitybased genetic health care issues. As genetic health care practice evolves, so will opportunities for research by nurses who can apply genetic concepts and interventions to improve the health of the public. This article presents an analysis of the evolution of genetic nursing research and challenges for the future.

scholarly journals Preferences for Return of Genetic Results Among Participants in the Jackson Heart Study and Framingham Heart Study

2019 ◽  
Vol 12 (12) ◽  
Author(s):  
Steven Joffe ◽  
Deborah E. Sellers ◽  
Lynette Ekunwe ◽  
Donna Antoine-Lavigne ◽  
Sarah McGraw ◽  
...  
Keyword(s):  
Genetic Testing ◽  
Framingham Heart Study ◽  
Absolute Risk ◽  
Genetic Research ◽  
Jackson Heart Study ◽  
Research Participants ◽  
Positive Attitudes ◽  
Heart Study ◽  
Younger Age ◽  
Genetic Results

Background: Surveys suggest that most research participants desire access to secondary (incidental) genomic findings. However, few studies clarify whether preferences vary by the nature of the finding. Methods: We surveyed members of the JHS (Jackson Heart Study, n=960), the FHS (Framingham Heart Study; n=955), and African American members of the FHS Omni cohort (n=160) who had consented to genomic studies. Each factorial survey included 3 vignettes, randomly selected from a set of 64, that described a secondary genomic result. Vignettes varied systematically by 5 factors identified by expert panels as salient: phenotype severity, actionability (preventability), reproductive significance, and relative and absolute risk of the phenotype. Respondents indicated whether they would want to receive the result. Data were analyzed separately by cohort using generalized linear mixed models. Results: Response rates ranged from 67% to 73%. Across vignettes, 88% to 92% of respondents would definitely or probably want to learn the result. In multivariate analyses among JHS respondents, desire for results was associated with positive attitudes towards genetic testing, lower education, higher subjective numeracy, and younger age, but not with any of the 5 factors. Among FHS respondents, desire for results was associated with higher absolute risk, preventability, reproductive risk, and positive attitudes towards genetic testing. Among FHS Omni respondents, desire for results was associated with positive attitudes towards genetic testing and younger age. Conclusions: Most genetic research participants desire return of secondary genetic results. Several factors identified by expert panels as salient are associated with preferences among FHS, but not JHS or FHS Omni, participants.

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