Ethical and Legal Issues in Genetic Epidemiology

Holtzman, Neil A.; Andrews, Lori B.

doi:10.1093/oxfordjournals.epirev.a017939

Cited by 28 publications

(8 citation statements)

References 61 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…studies pertaining to these field involve more complex ethical issues. Ethical guidelines related to it as per the regulation of the country or region should be complied with in these studies [10].…”

Section: Publicationmentioning

confidence: 99%

Ethical Issues in Epidemiological Studies

Kumar¹,

Shantaji²,

Gaidhane³

2018

IJCBR

View full text Add to dashboard Cite

Epidemiology is the study of the distribution and determinants of health related states and events in populations, and its application to the control of health problems. An epidemiological studies involve the population and as such ethical issues are an important aspect of it which need to be properly understood and adhered to. These issues can relate to informed consent, appropriate sample size, selection of participants, confidentiality, conflict of interest etc. Studies like therapeutic trial have also a lot of ethical issues which differ from issues pertaining to non-therapeutic trials. The source of funding for the study can have implication. Fabrication of data, manipulation during analysis, intentional changes in the result to obtain a pre desired outcome are some grey areas which need to be addressed. Another ethical issue is publication in certain Journals with monetary involvement. Lastly but not the least, authorship also have certain ethical issues. Attention to ethical issues can facilitate the effective planning, implementation, and growth of a variety of public health programs and research activities. Moreover with advancement in Epidemiology like molecular epidemiology, genetic epidemiology etc. the ethical issues become more complicated.Keywords: Ethics; Epidemiology; Epidemiological studies; Ethical Issues.

show abstract

Section: Publicationmentioning

confidence: 99%

Ethical Issues in Epidemiological Studies

Kumar¹,

Shantaji²,

Gaidhane³

2018

IJCBR

View full text Add to dashboard Cite

show abstract

“…Genetic information is not different. The idea that genetic research creates genetic information 14 about individuals and groups that did not exist before is misstated. Country doctors collected genetic information over 100 years ago every time they collected a family history.…”

Section: Genetic Information Is Different Than Other Medical Informationmentioning

confidence: 99%

A consumer perspective on informed consent and third-party issues

Terry

2001

Journal of Continuing Education in the Health Professions

View full text Add to dashboard Cite

Our two children were diagnosed with a rare genetic disorder, which led us to establish a research foundation. This led to in-depth consideration of issues surrounding informed consent from a consumer perspective. Third-party issues arose as central to the formulation of ethical policy in the establishment of a blood and tissue bank and an epidemiologic study. We suggest that a number of myths--privacy is possible, samples can be stripped of identifiers, humans are subjects, voluntary informed consent is attainable, genetics is about the individual only, genetic information is different than other medical information, research is altruistic, the public will learn truths about genetic research via media, and research is culturally competent--make it difficult to resolve the issues intrinsic to informed consent. A number of important elements could make policy decisions less complicated. These include conducting culturally competent research; conveying noncoercive hope, not hype; contacting the voluntary informant only; asking the informant to extend contact to other family members; requiring a comprehensive informed consent process for all contacted; and engaging in state-of-the-art data protections. There is a need for a "Genomic Hippocratic Oath," creating an ethical basis for research similar to the one vowed by health care professionals. Establishing ethical policies as a result of the collaboration of policy makers, researchers, and consumers will allow research to progress ethically at a rapid rate. If regulations are oppressive, they will thwart research; if they are too lenient, participants will not receive protections needed to participate safely.

show abstract

“…Não apenas em pesquisas, mas também no acompanhamento clínico, visando ao diagnóstico precoce de indivíduos com potencial suscetibilidade genética em populações específicas expostas a situações de risco, o uso de técnicas de biologia molecular envolve a coleta e o armazenamento de amostras biológicas, a análise e a interpretação dos resultados obtidos. Então, a discussão dos potenciais riscos destes procedimentos, tanto para o indivíduo como para a comunidade, é sempre fonte de preocupações e conflitos éticos (Ellsworth & Manolio, 1997;Holtzman & Andrews, 1997;Wicks et al ., 1999).…”

Section: Introductionunclassified

Genética, biologia molecular e ética: as relações trabalho e saúde

Gattás

Segre

Filho

2002

Ciênc. saúde coletiva

View full text Add to dashboard Cite

O artigo discute o impacto dos avanços da genética e da biologia molecular sobre a prática em saúde ocupacional. O conhecimento atual sobre o genoma humano permite, em certas circunstâncias, identificar fatores individuais de suscetibilidade a doenças em situações de exposição a substâncias químicas ou físicas, ou ainda, a doenças genéticas de manifestação tardia. Estudos epidemiológicos incorporando elementos da genética e da biologia molecular têm sido desenhados para avaliar a interação de variantes metabólicas e exposições ambientais no risco de ocorrência de diferentes doenças. Apesar desta perspectiva, considera-se que as pesquisas nesta área são ainda incipientes. A estratégia para a redução dos danos causados à saúde do trabalhador deve continuar a ter como base, prioritariamente, a modificação e a adequação dos ambientes de trabalho e não a especificação genética da força de trabalho. Introduzir a discussão sobre a necessidade de definir princípios de responsabilidade social no uso de informações genéticas e que possam reger ações éticas em saúde do trabalhador é uma das propostas principais deste artigo.

show abstract

Ethical and Legal Issues in Genetic Epidemiology

Cited by 28 publications

References 61 publications

Ethical Issues in Epidemiological Studies

Ethical Issues in Epidemiological Studies

A consumer perspective on informed consent and third-party issues

Genética, biologia molecular e ética: as relações trabalho e saúde

Contact Info

Product

Resources

About