‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

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‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]

View More ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

Related Articles

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]

View More ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

Related Articles

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]

View More ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

Related Articles

‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

J Med Ethics. 2019 Jan 24;:

Authors: Bowman-Smart H, Savulescu J, Mand C, Gyngell C, Pertile MD, Lewis S, Delatycki MB

Abstract
Non-invasive prenatal testing (NIPT) is at the forefront of prenatal screening. Current uses for NIPT include fetal sex determination and screening for chromosomal disorders such as trisomy 21 (Down syndrome). However, NIPT may be expanded to many different future applications. There are a potential host of ethical concerns around the expanding use of NIPT, as examined by the recent Nuffield Council report on the topic. It is important to examine what NIPT might be used for before these possibilities become consumer reality. There is limited research exploring views of women on possible future uses of NIPT, particularly those of women who have undergone NIPT. In this study, we examined the views of women who undertook NIPT previously on the acceptability of and interest levels in using NIPT for a number of current and possible future applications. These included several medical conditions encompassing psychiatric, neurodevelopmental and adult-onset conditions as well as non-medical traits such as intelligence. One thousand women were invited to participate and 235 eligible surveys were received. Women generally reported an interest in using NIPT for medical conditions that severely impacted quality of life and with an onset earlier in life and stressed the importance of the accuracy of the test. Concerns were raised about the use of NIPT for non-medical traits. Respondents indicated that termination of pregnancy was not their only reason for testing, particularly in the case of sex. These results can further inform the ethical debate around the increasing integration of NIPT into healthcare systems.

PMID: 30679192 [PubMed – as supplied by publisher]

View More ‘Is it better not to know certain things?’: views of women who have undergone non-invasive prenatal testing on its possible future applications.

Direct-to-Consumer Testing 2.0: Emerging Models of Direct-to-Consumer Genetic Testing.

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Direct-to-Consumer Testing 2.0: Emerging Models of Direct-to-Consumer Genetic Testing.

Mayo Clin Proc. 2018 01;93(1):113-120

Authors: Allyse MA, Robinson DH, Ferber MJ, Sharp RR

Abstract
Direct-to-consumer (DTC) genetic testing emerged in the early 2000s as a means of allowing consumers to access information on their genetics without the involvement of a physician. Although early models of DTC were popular with consumers, they were controversial in medical and regulatory circles. In this article, we trace the history of DTC genetic testing, discuss its regulatory implications, and describe the emergence of a new hybrid model we call DTC 2.0.

PMID: 29304915 [PubMed – indexed for MEDLINE]

View More Direct-to-Consumer Testing 2.0: Emerging Models of Direct-to-Consumer Genetic Testing.

Genes wide open: Data sharing and the social gradient of genomic privacy.

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Genes wide open: Data sharing and the social gradient of genomic privacy.

AJOB Empir Bioeth. 2018 Dec 31;:1-15

Authors: Haeusermann T, Fadda M, Blasimme A, Tzovaras BG, Vayena E

Abstract
This study reports on 13 semistructured in-depth interviews to qualitatively explore the experiences of individuals who publicly shared their direct-to-consumer genetic testing results on the platform openSNP. In particular, we focused on interviewees’ understanding of privacy. Participants reported that the likelihood and the magnitude of privacy harms depend on gender, ethnicity, sexual orientation, the stigma associated with certain clinical conditions, the existence of adequate legislation, and the nature of national health care systems. Some participants expressed the view that those who enjoy higher socioeconomic status or are better protected by their country’s legislation have a responsibility to share their genetic data. Our study shows that people who share their genetic data publicly online-far from being insensitive to privacy risks-have a complex understanding of the social, relational, and contextual nature of genetic privacy.

PMID: 30596357 [PubMed – as supplied by publisher]

View More Genes wide open: Data sharing and the social gradient of genomic privacy.

Ethical issues in susceptibility genetic testing for late-onset neurodegenerative diseases.

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Ethical issues in susceptibility genetic testing for late-onset neurodegenerative diseases.

Am J Med Genet B Neuropsychiatr Genet. 2018 Dec 07;:

Authors: Manrique de Lara A, Soto-Gómez L, Núñez-Acosta E, Saruwatari-Zavala G, Rentería ME

Abstract
Genome-wide association studies have revolutionized our understanding of the genetic architecture of complex traits and diseases over the last decade. This knowledge is enabling clinicians, researchers, and direct-to-consumer genetics companies to conduct disease susceptibility testing based on powerful methods such as polygenic risk scoring. However, these technologies raise a set of complex ethical, legal, social, and policy considerations. Here we review and discuss a series of ethical dilemmas associated with susceptibility genetic testing for the two most common late-onset neurodegenerative diseases, Alzheimer’s and Parkinson’s disease, including testing in asymptomatic individuals. Among others, these include informed consent, disclosure of results and unexpected findings, mandatory screening, privacy and confidentiality, and stigma and genetic discrimination. Importantly, appropriate counseling is a deciding factor for the ethical soundness of genetic testing, which poses a challenge for the regulation of these tests and the training of healthcare professionals. As genetic knowledge about these diseases continues growing and genetic testing becomes more widespread, it is increasingly important to raise awareness among researchers, medical practitioners, genetic counselors, and decision makers about the ethical, legal, and social issues associated with genetic testing for polygenic diseases.

PMID: 30525300 [PubMed – as supplied by publisher]

View More Ethical issues in susceptibility genetic testing for late-onset neurodegenerative diseases.

Recent developments in genetics and medically assisted reproduction: from research to clinical applications.

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Recent developments in genetics and medically assisted reproduction: from research to clinical applications.

Eur J Hum Genet. 2018 01;26(1):12-33

Authors: Harper JC, Aittomäki K, Borry P, Cornel MC, de Wert G, Dondorp W, Geraedts J, Gianaroli L, Ketterson K, Liebaers I, Lundin K, Mertes H, Morris M, Pennings G, Sermon K, Spits C, Soini S, van Montfoort APA, Veiga A, Vermeesch JR, Viville S, Macek M, on behalf of the European Society of Human Reproduction and Embryology and European Society of Human Genetics

Abstract
Two leading European professional societies, the European Society of Human Genetics and the European Society for Human Reproduction and Embryology, have worked together since 2004 to evaluate the impact of fast research advances at the interface of assisted reproduction and genetics, including their application into clinical practice. In September 2016, the expert panel met for the third time. The topics discussed highlighted important issues covering the impacts of expanded carrier screening, direct-to-consumer genetic testing, voiding of the presumed anonymity of gamete donors by advanced genetic testing, advances in the research of genetic causes underlying male and female infertility, utilisation of massively parallel sequencing in preimplantation genetic testing and non-invasive prenatal screening, mitochondrial replacement in human oocytes, and additionally, issues related to cross-generational epigenetic inheritance following IVF and germline genome editing. The resulting paper represents a consensus of both professional societies involved.

PMID: 29199274 [PubMed – indexed for MEDLINE]

View More Recent developments in genetics and medically assisted reproduction: from research to clinical applications.

Forensic genealogy: Some serious concerns.

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Forensic genealogy: Some serious concerns.

Forensic Sci Int Genet. 2018 09;36:203-204

Authors: Syndercombe Court D

Abstract
Genealogical databases have provided links to possible perpetrators of crimes in several cold cases in the US. This commentary discusses some of the ethical issues associated with this approach while recognising the underlying value of the identifications.

PMID: 30048922 [PubMed – indexed for MEDLINE]

View More Forensic genealogy: Some serious concerns.

HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.

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HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.

Am J Hum Genet. 2018 01 04;102(1):5-10

Authors: Evans BJ

Abstract
In 2014, the United States granted individuals a right of access to their own laboratory test results, including genomic data. Many observers feel that this right is in tension with regulatory and bioethical standards designed to protect the safety of people who undergo genomic testing. This commentary attributes this tension to growing pains within an expanding federal regulatory program for genetic and genomic testing. The Genetic Information Nondiscrimination Act of 2008 expanded the regulatory agenda to encompass civil rights and consumer safety. The individual access right, as it applies to genomic data, is best understood as a civil-rights regulation. Competing regulatory objectives-safety and civil rights-were not successfully integrated during the initial rollout of genomic civil-rights regulations after 2008. Federal law clarifies how to prioritize safety and civil rights when the two come into conflict, although with careful policy design, the two need not collide. This commentary opens a dialog about possible solutions to advance safety and civil rights together.

PMID: 29304376 [PubMed – indexed for MEDLINE]

View More HIPAA’s Individual Right of Access to Genomic Data: Reconciling Safety and Civil Rights.