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Hot Topics of the Day are picked by experts to capture the latest information and publications on public health genomics and precision health for various diseases and health topics. Sources include published scientific literature, reviews, blogs and popular press articles.

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94 hot topic(s) found with the query "Informed consent "

The ethics of deferred consent in times of pandemics
RVD Graaf et al, Nature Medicine, July 10, 2020 (Posted: Jul-11-2020 7AM)

In the current COVID-19 pandemic, many researchers are applying to research ethics committees for deferred-consent procedures for protocols that aim either to test treatments or to obtain tissue or samples from research participants. However, the deferred-consent procedure has not been developed for pandemics.


Informed Consent for Genetic Testing in Autopsy.
Gatter Ken et al. Archives of pathology & laboratory medicine 2020 Jan (Posted: Jan-29-2020 7AM)


Information Provided to Consumers about Direct-to-Consumer Nutrigenetic Testing.
De Suchetana et al. Public health genomics 2019 Nov 1-12 (Posted: Dec-04-2019 9AM)

The complex structure of the websites made it difficult to find all key information, with many important aspects buried in legal documents, which were challenging to comprehend even for a professional. The structure of the websites and the amount and quality of the content therein do not support a well-informed decision.


Informed Consent in the Genomics Era.
Rego Shannon et al. Cold Spring Harbor perspectives in medicine 2019 Sep (Posted: Oct-09-2019 8AM)


A Professional Standard for Informed Consent for Stem Cell Therapies
J Sugarman et al, JAMA, August 12, 2019 (Posted: Aug-13-2019 8AM)

The ISSCR developed a professional standard for consent by assembling a task force of experts in stem cells, clinical practice, ethics, and the law. The task force created a draft standard, which was then reviewed by 30 individuals from 9 countries and revised based on their comments.


Time to discuss consent in digital-data studies
Nature editorial, July 31, 2019 (Posted: Aug-01-2019 8AM)

Anonymized data sets are growing and it is becoming easier to identify individuals. Research-consent procedures must be updated to protect people's privacy and confidentiality.


Overvaluing individual consent ignores risks to tribal participants
KS Tsosie et al, Nature Rev Genetics, July 15, 2019 (Posted: Jul-16-2019 8AM)

Genomic studies often rely on individual-based consent approaches for tribal members residing outside of their communities. This consent model fails to acknowledge the risks to small groups such as tribes, which can implicate the community as a whole.


Secondary findings from next generation sequencing: Psychological and ethical issues. Family and patient perspectives.
Houdayer F et al. European journal of medical genetics 2019 Jun 103711 (Posted: Jul-10-2019 8AM)

Access to active search for actionable secondary findings (SF) in diagnostic practice is a major psychological and ethical issue for genomic medicine. In this study, the authors analyzed the preferences of patients and their families regarding SF and identified the reporting procedures necessary for informed consent


Unique characteristics of informed consent in clinical genetics and genetic counselling.
Havlovicová Markéta et al. Casopis lekaru ceskych 2019 158(1) 38-43 (Posted: May-08-2019 9AM)


Responsible data sharing in international health research: a systematic review of principles and norms.
Kalkman Shona et al. BMC medical ethics 2019 Mar (1) 21 (Posted: Mar-31-2019 10AM)


Role and practice evolution for genetic counseling in the genomic era: The experience of Australian and UK genetics practitioners.
Dwarte Tanya et al. Journal of genetic counseling 2018 Dec (Posted: Jan-15-2019 11AM)


Opening the "black box" of informed consent appointments for genome sequencing: a multisite observational study.
Sanderson Saskia C et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Oct (Posted: Oct-06-2018 9AM)


Ethical Implications of Direct-to-Consumer Hereditary Cancer Tests.
Kilbride Madison K et al. JAMA oncology 2018 Jul (Posted: Jul-22-2018 2PM)


Consent and participation in the 100,000 Genomes Project – public attitudes
Genomics England, July 18, 2018 (Posted: Jul-22-2018 2PM)


Developing a conceptual, reproducible, rubric-based approach to consent and result disclosure for genetic testing by clinicians with minimal genetics background
KE Ormond et al, Genetics in Medicine, July 6, 2018 (Posted: Jul-06-2018 8AM)


Development of a consent resource for genomic data sharing in the clinical setting.
Riggs Erin Rooney et al. Genetics in medicine : official journal of the American College of Medical Genetics 2018 Jun (Posted: Jun-26-2018 7PM)


Unique Burdens of Pediatric Clinical Trials in Duchenne Muscular Dystrophy, April 20-21, 2017, Bethesda, Maryland, USA.
Franson Timothy et al. Therapeutic innovation & regulatory science 2018 Jan 2168479018764650 (Posted: May-02-2018 9AM)


Tensions in ethics and policy created by National Precision Medicine Programs.
Minari Jusaku et al. Human genomics 2018 Apr (1) 22 (Posted: Apr-22-2018 0PM)


Trust, Precision Medicine Research, and Equitable Participation of Underserved Populations.
Sabatello Maya et al. The American journal of bioethics : AJOB 2018 Apr 18(4) 34-36 (Posted: Apr-10-2018 9AM)


Analysis of state laws on informed consent for clinical genetic testing in the era of genomic sequencing.
Spector-Bagdady Kayte et al. American journal of medical genetics. Part C, Seminars in medical genetics 2018 Mar (Posted: Mar-27-2018 1PM)


Key Implications of Data Sharing in Pediatric Genomics.
Rahimzadeh Vasiliki et al. JAMA pediatrics 2018 Mar (Posted: Mar-21-2018 4PM)


Informed consent in field trials of gene-drive mosquitoes.
Kolopack Pamela A et al. Gates open research 2017 Dec 14 (Posted: Feb-16-2018 1PM)


A randomized controlled study of a consent intervention for participating in an NIH genome sequencing study
E Turbitt et al, Eur J Hum Genetics, Feb 16, 2018 (Posted: Feb-16-2018 1PM)


Communicating Identifiability Risks to Biobank Donors.
Kasperbauer T J et al. Cambridge quarterly of healthcare ethics : CQ : the international journal of healthcare ethics committees 2018 Jan (1) 123-136 (Posted: Feb-15-2018 9AM)


Estimating the number of potential family members eligible for BRCA1 and BRCA2 mutation testing in a "Traceback" approach.
Moss Haley A et al. Genetic epidemiology 2017 Nov (Posted: Dec-03-2017 1PM)


Identification of BRCA1 and BRCA2 Mutation Carriers Through a Traceback Framework: Consent, Privacy, and Autonomy.
Schwartz Marc D et al. Journal of clinical oncology : official journal of the American Society of Clinical Oncology 2017 Jul 35(20) 2226-2228 (Posted: Oct-04-2017 10AM)


Readability of informed consent forms for whole-exome and whole-genome sequencing.
Niemiec Emilia et al. Journal of community genetics 2017 Aug (Posted: Sep-06-2017 11AM)


Fragile X Newborn Screening: Lessons Learned From a Multisite Screening Study.
Bailey Donald B et al. Pediatrics 2017 Jun 139(Suppl 3) S216-S225 (Posted: Aug-23-2017 9AM)


Genome privacy: challenges, technical approaches to mitigate risk, and ethical considerations in the United States.
Wang Shuang et al. Annals of the New York Academy of Sciences 2017 Jan (1) 73-83 (Posted: Aug-14-2017 11AM)


Participants' Understanding of Informed Consent for Biobanking: A Systematic Review.
Eisenhauer Elizabeth R et al. Clinical nursing research 2017 Jul 1054773817722690 (Posted: Aug-02-2017 8AM)


Informed consent for next-generation nucleotide sequencing studies: Aiding communication between participants and investigators.
Kost Rhonda G et al. Journal of clinical and translational science 2017 Apr 1(2) 115-120 (Posted: Jul-05-2017 9AM)


Stakeholder views on secondary findings in whole-genome and whole-exome sequencing: a systematic review of quantitative and qualitative studies.
Mackley Michael P et al. Genetics in medicine : official journal of the American College of Medical Genetics 2017 Mar 19(3) 283-293 (Posted: Apr-26-2017 9AM)


Public Attitudes toward Consent and Data Sharing in Biobank Research: A Large Multi-site Experimental Survey in the US.
Sanderson Saskia C et al. American journal of human genetics 2017 Mar 100(3) 414-427 (Posted: Apr-12-2017 8AM)


Community recommendations on biobank governance: Results from a deliberative community engagement in California.
Dry Sarah M et al. PloS one 2017 12(2) e0172582 (Posted: Apr-12-2017 8AM)


Informed Consent: The Case of “-Omics” Literacy
Hammer Marilyn et al. Oncology nursing forum 2017 01 (1) 28-30 (Posted: Mar-14-2017 0PM)


The Sudden Death in the Young Case Registry: Collaborating to Understand and Reduce Mortality.
Burns Kristin M et al. Pediatrics 2017 Mar 139(3) (Posted: Mar-08-2017 8AM)


Informed Consent
J Drazen et al, NEJM, March 2017 (Posted: Mar-06-2017 6PM)


Revamping the US Federal Common Rule: Modernizing Human Participant Research Regulations.
Hodge James G et al. JAMA 2017 Feb (Posted: Mar-05-2017 2PM)


Regulation of genomic and biobanking research in Africa: a content analysis of ethics guidelines, policies and procedures from 22 African countries.
de Vries Jantina et al. BMC medical ethics 2017 Feb 18(1) 8 (Posted: Feb-08-2017 9AM)


"It's all about trust": reflections of researchers on the complexity and controversy surrounding biobanking in South Africa.
Moodley Keymanthri et al. BMC medical ethics 2016 Oct (1) 57 (Posted: Oct-16-2016 8AM)


A pilot randomised controlled trial of the feasibility, acceptability and impact of giving information on personalised genomic risk of melanoma to the public.
Smit Amelia K et al. Cancer epidemiology, biomarkers & prevention : a publication of the American Association for Cancer Research, cosponsored by the American Society of Preventive Oncology 2016 Oct (Posted: Oct-12-2016 11AM)


Biospecimen Sharing Among Hispanic Women in a Safety-Net Clinic: Implications for the Precision Medicine Initiative.
Nodora Jesse N et al. Journal of the National Cancer Institute 2017 Feb 109(2) (Posted: Oct-05-2016 2PM)


All your data (effectively) belong to us: data practices among direct-to-consumer genetic testing firms.
Laestadius Linnea I et al. Genetics in medicine : official journal of the American College of Medical Genetics 2016 Sep (Posted: Sep-27-2016 11AM)


Past, Present, and Future of Informed Consent in Pain and Genomics Research: Challenges Facing Global Medical Community.
Compagnone Christian et al. Pain practice : the official journal of World Institute of Pain 2016 Aug (Posted: Aug-31-2016 9AM)


Experiences with obtaining informed consent for genomic sequencing.
Bernhardt Barbara A et al. American journal of medical genetics. Part A 2015 Nov 167A(11) 2635-46 (Posted: Aug-31-2016 9AM)


Ethics Reporting in Biospecimen and Genetic Research: Current Practice and Suggestions for Changes.
Chin William Wei Lim et al. PLoS biology 2016 Aug 14(8) e1002521 (Posted: Aug-10-2016 9AM)


Recommendations for the implementation of BRCA testing in the care and treatment pathways of ovarian cancer patients.
Pinto Carmine et al. Future oncology (London, England) 2016 May (Posted: Jun-01-2016 0PM)


An informatics research agenda to support precision medicine: seven key areas.
Tenenbaum Jessica D et al. Journal of the American Medical Informatics Association : JAMIA 2016 Apr (Posted: Apr-27-2016 11AM)


Merging Electronic Health Record Data and Genomics for Cardiovascular Research: A Science Advisory From the American Heart Association.
Hall Jennifer L et al. Circulation. Cardiovascular genetics 2016 Mar (Posted: Mar-16-2016 10AM)


Precision medicine: opportunities, possibilities, and challenges for patients and providers.
Adams Samantha A et al. Journal of the American Medical Informatics Association : JAMIA 2016 Mar (Posted: Mar-16-2016 10AM)


Consenting postpartum women for use of routinely collected biospecimens and/or future biospecimen collection.
Kozinetz Claudia A et al. Journal of community genetics 2016 Feb (Posted: Feb-17-2016 0PM)


Improving the informed consent process in international collaborative rare disease research: effective consent for effective research.
Gainotti Sabina et al. European journal of human genetics : EJHG 2016 Feb (Posted: Feb-17-2016 0PM)


Review of Commercially Available Epilepsy Genetic Panels.
Chambers Chelsea et al. Journal of genetic counseling 2015 Nov (Posted: Jan-21-2016 5PM)


Building the Partners HealthCare Biobank at Partners Personalized Medicine: Informed Consent, Return of Research Results, Recruitment Lessons and Operational Considerations.
Karlson Elizabeth W et al. Journal of personalized medicine 6(1) (Posted: Jan-20-2016 11AM)


Family tree and ancestry inference: is there a need for a 'generational' consent?
Wallace Susan E et al. BMC medical ethics 2015 (1) 87 (Posted: Jan-13-2016 7PM)


'Is this knowledge mine and nobody else's? I don't feel that.' Patient views about consent, confidentiality and information-sharing in genetic medicine.
Dheensa Sandi et al. Journal of medical ethics 2016 Jan (Posted: Jan-13-2016 7PM)


Balancing Benefits and Risks of Immortal Data: Participants' Views of Open Consent in the Personal Genome Project.
Zarate Oscar A et al. The Hastings Center report 2015 Dec (Posted: Jan-06-2016 7PM)


International Guidelines for Privacy in Genomic Biobanking (or the Unexpected Virtue of Pluralism).
Thorogood Adrian et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec (4) 690-702 (Posted: Jan-06-2016 9AM)


Genomic Databases and Biobanks in Israel.
Siegal Gil et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec (4) 766-75 (Posted: Jan-06-2016 9AM)


Regulation of Biobanks in France.
Rial-Sebbag Emmanuelle et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2015 Dec (4) 754-65 (Posted: Jan-06-2016 9AM)


Preparing for the consent conversation
Genomics Education Program UK (Posted: Dec-11-2015 11AM)


Obtaining informed consent for genomics research in Africa: analysis of H3Africa consent documents.
Munung Nchangwi Syntia et al. Journal of medical ethics 2015 Dec (Posted: Dec-09-2015 9AM)


The 3-I framework: a framework for developing public policies regarding pharmacogenomics (PGx) testing in Canada.
Bashir Naazish S et al. Genome / National Research Council Canada = Genome / Conseil national de recherches Canada 2015 Nov 1-14 (Posted: Dec-02-2015 9AM)


Precision medicine ethics: selected issues and developments in next-generation sequencing, clinical oncology, and ethics.
Fiore Robin N et al. Current opinion in oncology 2015 Nov (Posted: Nov-19-2015 0PM)


A systematic literature review of individualsÂ’ perspectives on broad consent and data sharing in the United States
NA Garrison et al, Genetics in Medicine, November 18, 2015 (Posted: Nov-19-2015 0PM)


Noninvasive Prenatal Genetic Testing: Current and Emerging Ethical, Legal, and Social Issues.
Minear Mollie A et al. Annu Rev Genomics Hum Genet 2015 Aug 24. 16369-398 (Posted: Sep-02-2015 1PM)


Motivations, concerns and preferences of personal genome sequencing research participants: Baseline findings from the HealthSeq project.
Sanderson Saskia C et al. Eur. J. Hum. Genet. 2015 Jun 3. (Posted: Sep-01-2015 11AM)


Opinions of Young Adults on Re-Consenting for Biobanking.
Rush Amanda et al. J. Pediatr. 2015 Jul 30. (Posted: Aug-04-2015 2PM)


Changing Trends in Carrier Screening for Genetic Disease in the United States.
Nazareth Shivani B et al. Prenat. Diagn. 2015 Jul 3. (Posted: Jul-28-2015 1PM)


Overcoming challenges to meaningful informed consent for whole genome sequencing in pediatric cancer research.
Oberg Jennifer A et al. Pediatr Blood Cancer 2015 Aug (8) 1374-80 (Posted: Jul-27-2015 9AM)


"Not Tied Up Neatly with a Bow": Professionals' Challenging Cases in Informed Consent for Genomic Sequencing.
Tomlinson Ashley N et al. J Genet Couns 2015 Apr 26. (Posted: Jul-27-2015 9AM)


Parental Consent for the Use of Residual Newborn Screening Bloodspots: Respecting Individual Liberty vs Ensuring Public Health.
Bayefsky Michelle J et al. JAMA 2015 Jul 7. (1) 21-2 (Posted: Jul-27-2015 9AM)


Drifting Away from Informed Consent in the Era of Personalized Medicine.
Parens Erik et al. Hastings Cent Rep 2015 Jul (4) 16-20 (Posted: Jul-27-2015 9AM)


Experiences with obtaining informed consent for genomic sequencing.
Bernhardt Barbara A et al. Am. J. Med. Genet. A 2015 Jul 21. (Posted: Jul-27-2015 9AM)


Preliminary Guidance Related to Informed Consent for Research on Dried Blood Spots Obtained Through Newborn Screening
NIH, July 2015 Brand (Posted: Jul-27-2015 9AM)


Fair Shares and Sharing Fairly: A Survey of Public Views on Open Science, Informed Consent and Participatory Research in Biobanking.
Joly Yann et al. PLoS ONE 2015 (7) e0129893 (Posted: Jul-17-2015 11AM)


Retention and research use of residual newborn screening bloodspots.
Botkin Jeffrey R et al. Pediatrics 2013 Jan (1) 120-7 (Posted: Jul-02-2015 0PM)


Residual newborn screening samples for research: parental information needs for decision-making.
Rothwell Erin et al. J Spec Pediatr Nurs 2013 Apr (2) 115-22 (Posted: Jul-02-2015 0PM)


Attitudes about the use of newborn dried blood spots for research: a survey of underrepresented parents.
Hendrix Kristin S et al. Acad Pediatr 2013 Sep-Oct (5) 451-7 (Posted: Jul-02-2015 0PM)


Using patient monetary incentives and electronically derived patient lists to recruit patients to a clinical trial.
Ruffin Mack T et al. J Am Board Fam Med 2011 Sep-Oct (5) 569-75 (Posted: May-14-2015 11AM)


Using community-based participatory research principles to develop more understandable recruitment and informed consent documents in genomic research.
Skinner Harlyn G et al. PLoS ONE 2015 10(5) e0125466 (Posted: May-06-2015 10AM)


Stakeholders' perspectives on biobank-based genomic research: systematic review of the literature.
Husedzinovic Alma et al. Eur. J. Hum. Genet. 2015 Mar 4. (Posted: Apr-11-2015 8AM)


Informed Consent and Health Literacy: Workshop Summary
Institute of Medicine Workshop Report, March 16, 2015 (Posted: Mar-16-2015 9AM)


Enduring and emerging challenges of informed consent.
Grady Christine et al. N. Engl. J. Med. 2015 Feb 26. (9) 855-62 (Posted: Feb-27-2015 11AM)


The challenge of informed consent and return of results in translational genomics: empirical analysis and recommendations.
Henderson Gail E et al. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics 2014 (3) 344-55 (Posted: Feb-12-2015 8AM)


Obtaining informed consent for clinical tumor and germline exome sequencing of newly diagnosed childhood cancer patients.
Scollon Sarah et al. Genome medicine 2014 (9) 69 (Posted: Feb-12-2015 8AM)


Informed consent and ethical re-use of African genomic data.
Wright Galen et al. Human genomics 2014 Oct (1) 18 (Posted: Feb-12-2015 8AM)


Testing an online, dynamic consent portal for large population biobank research.
Thiel Daniel B et al. Public health genomics 2015 (1) 26-39 (Posted: Feb-12-2015 8AM)


Researchers' views on informed consent for return of secondary results in genomic research.
Appelbaum Paul S et al. Genetics in medicine : official journal of the American College of Medical Genetics 2014 Dec (Posted: Feb-12-2015 8AM)


NIH policy supports broader sharing of genomic data, strengthens informed-consent rules: Research participants must give consent for secondary sharing, even if data are de-identified.
Am J Med Genet A. 2015 Jan;167(1):viii-ix. (Posted: Feb-12-2015 8AM)


The emerging need for family-centric initiatives for obtaining consent in personal genome research.
Minari Jusaku et al. Genome medicine 2014 (12) 118 (Posted: Feb-12-2015 8AM)


Genetic screening and testing in an episode-based payment model: preserving patient autonomy.
Sutherland Sharon et al. Obstetrics and gynecology 2014 Nov (5) 987-91 (Posted: Feb-12-2015 8AM)


National Human Genome Research Institute: Informed Consent Resources for Genomics Research
(Posted: Feb-12-2015 8AM)


National Human Genome Research Institute updates online resource on informed consent for genomics research
By Raymond MacDougall, February 4, 2015 (Posted: Feb-12-2015 8AM)



Disclaimer: Articles listed in Hot Topics of the Day are selected by the CDC Office of Public Health Genomics to provide current awareness of the scientific literature and news. Inclusion in the update does not necessarily represent the views of the Centers for Disease Control and Prevention nor does it imply endorsement of the article's methods or findings. CDC and DHHS assume no responsibility for the factual accuracy of the items presented. The selection, omission, or content of items does not imply any endorsement or other position taken by CDC or DHHS. Opinion, findings and conclusions expressed by the original authors of items included in the Clips, or persons quoted therein, are strictly their own and are in no way meant to represent the opinion or views of CDC or DHHS. References to publications, news sources, and non-CDC Websites are provided solely for informational purposes and do not imply endorsement by CDC or DHHS.
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