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2.
Genome Med ; 12(1): 95, 2020 11 09.
Artigo em Inglês | MEDLINE | ID: mdl-33168072

RESUMO

Genomic studies of patients with COVID-19, or exposed to it, are underway to delineate host factors associated with variability in susceptibility, infectivity, and disease severity. Here, we highlight the ethical implications-both potential benefits and harms-of genomics for clinical practice and public health in the era of COVID-19.


Assuntos
Infecções por Coronavirus/patologia , Predisposição Genética para Doença/genética , Testes Genéticos/ética , Genômica/ética , Pneumonia Viral/patologia , Saúde Pública/ética , Betacoronavirus , Tomada de Decisão Clínica/métodos , Infecções por Coronavirus/terapia , Genômica/métodos , Humanos , Pandemias , Pneumonia Viral/terapia , Saúde Pública/métodos
3.
PLoS One ; 15(10): e0239714, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-33052909

RESUMO

The general public is increasingly aware of the role of genes in causing depression. Recent studies have begun uncovering unintended negative consequences of learning about a person's genetic susceptibility to disorders. Because people tend to believe that genes determine one's identity, having genes related to a disorder can be misinterpreted as equivalent to having the disorder. Consequently, learning that a person is genetically predisposed to depression can make people misremember mild depression as more severe. Participants across three experiments read a target vignette about a character displaying mild depressive symptoms, while descriptions of the character's genetic susceptibility to depression were experimentally manipulated. Participants then read a foil vignette describing a character with more severe depressive symptoms. Afterwards, participants who had learned that the target character was genetically predisposed to depression were comparatively more likely to misremember the target symptoms as being severe, when in fact they were mild. This pattern of results was obtained among both laypeople (Experiments 1 and 2) and practicing master's-level, but not doctoral-level, mental health clinicians (Experiment 3). Given that depression is diagnosed primarily based on a person's memory of depressive symptoms, the current findings suggest that genetic information about depression may lead to over-diagnosis of depression.


Assuntos
Depressão/genética , Predisposição Genética para Doença/psicologia , Testes Genéticos/ética , Adulto , Depressão/metabolismo , Depressão/psicologia , Transtorno Depressivo/psicologia , Feminino , Predisposição Genética para Doença/genética , Humanos , Aprendizagem , Masculino , Memória , Preconceito/psicologia
4.
Brain Nerve ; 72(7): 719-725, 2020 Jul.
Artigo em Japonês | MEDLINE | ID: mdl-32641568

RESUMO

The purpose of this paper is to review and introduce several topics regarding clinical ethics of hereditary neurological disorders. The author reflects the historical background about "right to know" and "right not to know" the results of genetic testing in 1990s, including pediatric genetic testing. Twenty years after, advanced genome sequencing technologies enable us to analyze whole genome while they also encourage us to reconsider the ethical norms. The current topics are such us secondary findings and actionability, support for telling the genetic secrets to biological relatives, duty of confidentiality and duty of care to third parties, indivisibility in research and diagnosis and pre-implantation genetic testing for monogenic/single gene defects.


Assuntos
Testes Genéticos , Doenças do Sistema Nervoso , Criança , Confidencialidade , Família , Testes Genéticos/ética , Humanos , Doenças do Sistema Nervoso/diagnóstico , Doenças do Sistema Nervoso/genética
5.
Med Sci (Paris) ; 36(5): 515-520, 2020 May.
Artigo em Francês | MEDLINE | ID: mdl-32452374

RESUMO

The genetic tests for "non-rare thrombophilias" (TNR) were introduced into clinical setting immediately after the identification of genetic variants in the mid-90s to predict and prevent venous thromboembolism (VTE). Although being a rare example of a genetic test of susceptibility for complex diseases that has been integrated in medical routine, it is the most widespread post-natal genetics inquiry in France nowadays. Yet, determining whom to test and how to use the results is still controversial. This article outlines the trajectory of its clinical regulation and illustrates the importance of the context of use to understand its diffusion. This analysis is intended to feed a more general reflection on the issues raised by the clinical integration of genetic surveys for common diseases, particularly with regard to the clinical utility of a test (statistical vs. biological), the subjects to be tested (the case index and/or her/his relatives), and the criteria underlying access to these tests (modalities of medico-economic assessment).


Assuntos
Testes Genéticos , Trombofilia/diagnóstico , Trombofilia/genética , Acesso à Informação/legislação & jurisprudência , Revelação/ética , Revelação/legislação & jurisprudência , França/epidemiologia , Predisposição Genética para Doença , Testes Genéticos/ética , Testes Genéticos/legislação & jurisprudência , Testes Genéticos/métodos , Acesso aos Serviços de Saúde/ética , Acesso aos Serviços de Saúde/legislação & jurisprudência , História do Século XXI , Humanos , Recém-Nascido , Legislação Médica , Futilidade Médica/ética , Futilidade Médica/legislação & jurisprudência , Triagem Neonatal/ética , Triagem Neonatal/legislação & jurisprudência , Triagem Neonatal/métodos , Padrões de Prática Médica/ética , Padrões de Prática Médica/legislação & jurisprudência , Padrões de Prática Médica/tendências , Valor Preditivo dos Testes , Trombofilia/epidemiologia
6.
Med Sci (Paris) ; 36(3): 289-291, 2020 Mar.
Artigo em Francês | MEDLINE | ID: mdl-32228853

RESUMO

A new company is offering extensive genetic analysis of embryos during an in vitro fertilisation procedure, allowing the derivation of polygenic scores for several diseases and embryo choice based on these results. Polygenic scores, if properly implemented, can indeed have substantial predictive value, and the possibility of embryo choice based on these data has become real, raising a number of practical and ethical problems. ‡.


Assuntos
Pesquisas com Embriões/ética , Fertilização In Vitro/ética , Testes Genéticos/ética , Diagnóstico Pré-Implantação/ética , Diagnóstico Pré-Implantação/métodos , Comportamento de Escolha , Análise Mutacional de DNA/ética , Análise Mutacional de DNA/métodos , Fertilização In Vitro/métodos , Fertilização In Vitro/tendências , Engenharia Genética/ética , Testes Genéticos/métodos , Testes Genéticos/normas , Humanos , Herança Multifatorial/genética , Diagnóstico Pré-Implantação/normas , Projetos de Pesquisa
7.
Med Sci (Paris) ; 36(2): 153-159, 2020 Feb.
Artigo em Francês | MEDLINE | ID: mdl-32129752

RESUMO

The direct-to-consumer genetic testing (DTC-GT) market has been developing for about twenty years now, raising various debates, even controversies. But what about the regulation of these so-called "innovative" devices, but whose medical status is ambiguous? A first regulatory aspect is depending on the market itself, since the latter is currently subjected to a strong structuring process. A second regulatory aspect, more classical, is the legal one. While the DTC-GT status has long been unclear on European scale, a new text (a Regulation, not a Directive) is modifying the situation. It encourages regulation "by the market" rather than "by the medical profession", which does not imply that the latter will have no (indirect) impact on the DTC-GT market.


Assuntos
Triagem e Testes Direto ao Consumidor/legislação & jurisprudência , Testes Genéticos/legislação & jurisprudência , Setor de Assistência à Saúde/legislação & jurisprudência , Legislação Médica , Triagem e Testes Direto ao Consumidor/ética , Triagem e Testes Direto ao Consumidor/métodos , Triagem e Testes Direto ao Consumidor/normas , Europa (Continente) , União Europeia , Aconselhamento Genético , Testes Genéticos/economia , Testes Genéticos/ética , Testes Genéticos/métodos , Regulamentação Governamental , Política de Saúde/legislação & jurisprudência , Humanos , Legislação Farmacêutica , Marketing de Serviços de Saúde/legislação & jurisprudência
8.
Per Med ; 17(2): 141-153, 2020 03.
Artigo em Inglês | MEDLINE | ID: mdl-32125932

RESUMO

The rapidly evolving popularity of direct-to-consumer genetic genealogy companies has made it possible to retrieve genomic information for unintended reasons by third parties, including the emerging use for law enforcement purposes. The question remains whether users of direct-to-consumer genetic genealogy companies and genealogical databases are aware that their genetic and/or genealogical data could be used as means to solving forensic cases. Our review of 22 companies' and databases' policies showed that only four companies have provided additional information on how law enforcement agencies should request permission to use their services for law enforcement purposes. Moreover, two databases have adopted a different approach by providing a special service for law enforcement. Although all companies and databases included in the study provide at least some provisions about police access, there is an ongoing debate over the ethics of these practices, and how to balance users' privacy with law enforcement requests.


Assuntos
Privacidade Genética/legislação & jurisprudência , Testes Genéticos/ética , Bases de Dados Factuais/ética , Bases de Dados Factuais/legislação & jurisprudência , Triagem e Testes Direto ao Consumidor/ética , Triagem e Testes Direto ao Consumidor/legislação & jurisprudência , Privacidade Genética/ética , Testes Genéticos/legislação & jurisprudência , Política de Saúde , Humanos , Linhagem
9.
PLoS One ; 15(3): e0229540, 2020.
Artigo em Inglês | MEDLINE | ID: mdl-32176704

RESUMO

As genetic testing technology advances, genetic testing will move into standard practice in the primary care setting. Genetic research, testing, and return of results are complex topics that require input from Alaska Native and American Indian (ANAI) communities as policies are developed for implementation. This study employed a day and half long public deliberation with ANAI primary care patients to elicit value-laden views of genetic research, testing, and return of results. Participants emphasized the need for a balance between the potential for genetics research, testing, and return of results to empower individuals and improve health with the potential to expose individuals and communities to privacy breaches, discrimination, and emotional harms. Public deliberation was well received by this group of participants and elicited rich discussion on the complex topic of genetic research, testing, and return of results.


Assuntos
/psicologia , Testes Genéticos/ética , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Adulto , Alaska/etnologia , Feminino , Pesquisa em Genética/ética , Humanos , Masculino
10.
BMC Med Ethics ; 21(1): 15, 2020 02 10.
Artigo em Inglês | MEDLINE | ID: mdl-32041603

RESUMO

BACKGROUND: The clinical introduction of non-invasive prenatal testing for fetal aneuploidies is currently transforming the landscape of prenatal screening in many countries. Since it is noninvasive, safe and allows the early detection of abnormalities, NIPT expanded rapidly and the test is currently commercially available in most of the world. As NIPT is being introduced globally, its clinical implementation should consider various challenges, including the role of the surrounding social and cultural contexts. We conducted a qualitative study with healthcare professionals in Lebanon and Quebec as case studies, to highlight the relevance of cultural contexts and to explore the concerns that should be taken into account for an ethical implementation of NIPT. METHODS: We conducted semi-structured interviews with 20 healthcare professionals (HCPs), 10 from each country, practicing in the field of prenatal screening and follow up diagnostic testing, including obstetricians and gynecologists, nurses, medical geneticists and, genetic counselors. We aimed to 1) explore HCPs' perceptions and views regarding issues raised by NIPT and 2) to shed light on ways in which the introduction of the same technology (NIPT) in two different contexts (Lebanon and Quebec) raises common and different challenges that are influenced by the cultural norms and legal policies in place. RESULTS: We identified challenges to the ethical implementation of NIPT. Some are common to both contexts, including financial/economic, social, and organizational/ educational challenges. Others are specific to each context. For example, challenges for Lebanon include abortion policy and financial profit, and in Quebec challenges include lobbying by Disability rights associations and geographical access to NIPT. CONCLUSIONS: Our findings highlight the need to consider specific issues related to various cultural contexts when developing frameworks that can guide an ethically sound implementation of NIPT. Further, they show that healthcare professional education and training remain paramount in order to provide NIPT counseling in a way that supports pregnant women and couples' choice.


Assuntos
Atitude do Pessoal de Saúde , Testes Genéticos/ética , Diagnóstico Pré-Natal/ética , Adulto , Aneuploidia , Características Culturais , Feminino , Humanos , Líbano , Gravidez , Pesquisa Qualitativa , Quebeque
13.
Curr Opin Psychiatry ; 33(2): 136-140, 2020 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-31770136

RESUMO

PURPOSE OF REVIEW: Advances in personal genomics have made predictive genetic testing increasingly popular. The purpose of this review is to examine and summarize recent literature regarding the ethical concerns and considerations surrounding genetic testing for Alzheimer's disease. RECENT FINDINGS: Four basic bioethical principles can be applied in the context of genetic testing: autonomy, nonmaleficence, beneficence and justice. The concepts of clinical validity, clinical utility and personal utility are also necessary for the ethical deliberation of genetic testing for Alzheimer's disease. Ethical considerations can differ among three distinct settings present in the literature: research, clinical and direct-to-consumer services. Studies have found that the negative psychosocial impact of genetic test results on the individual is limited, but emphasize the importance of pre/posttesting genetic counselling. SUMMARY: The literature should ideally inform policy-making around genetic testing. There exists an urgent need for regulation, particularly in the direct-to-consumer (DTC) market, since interest for testing in this context is rapidly growing. Standardized protocols for disclosure should be developed, and there is a need to find ways to meet the growing need for genetic counselling. Importantly, comprehensive, evidence-based regulation requires that research be conducted in different contexts with more diverse participants.


Assuntos
Doença de Alzheimer , Aconselhamento Genético/psicologia , Testes Genéticos , Doença de Alzheimer/diagnóstico , Doença de Alzheimer/genética , Doença de Alzheimer/psicologia , Testes Genéticos/ética , Testes Genéticos/normas , Humanos , Utilização de Procedimentos e Técnicas , Reprodutibilidade dos Testes
14.
Artigo em Inglês | MEDLINE | ID: mdl-31847347

RESUMO

Black women at-risk for hereditary breast and ovarian cancer (HBOC) continue to underutilize genetic counseling and testing (GCT). One reason for this disparity is a fear of discrimination from insurance companies if identified as high-risk. The Genetic Information Nondiscrimination Act (GINA) was enacted to protect against this type of discrimination; however, Black women's levels of confidence in this law are unknown. In this descriptive study, we sought to (1) assess Black women's confidence in the GINA law and (2) identify multilevel factors related to their confidence in GINA. Ninety-four Black women at-risk of HBOC completed surveys that assessed intrapersonal, interpersonal, and structural factors. Multiple regression analysis determined factors associated with confidence in GINA. Most women were ≤50 years of age (66.0%) and about half never had a cancer diagnosis (51.1%). Confidence in GINA was moderate (mean = 10.67; standard deviation = 2.54; range = 5-15). Women who valued GCT reported more confidence in GINA (ß = 0.345; CI 0.017 to 0.673; p = 0.040). Lack of confidence in GINA may serve as a barrier to seeking GCT. Efforts to increase the perceived value of GCT among Black women could be benefited by increasing awareness of national efforts towards privacy protections of genetic information.


Assuntos
Afro-Americanos/psicologia , Neoplasias da Mama/psicologia , Aconselhamento Genético/legislação & jurisprudência , Testes Genéticos/legislação & jurisprudência , Neoplasias Ovarianas/psicologia , Adulto , Afro-Americanos/genética , Feminino , Aconselhamento Genético/ética , Testes Genéticos/ética , Humanos , Pessoa de Meia-Idade , Neoplasias Ovarianas/genética , Inquéritos e Questionários
15.
BMC Med Ethics ; 20(1): 85, 2019 11 27.
Artigo em Inglês | MEDLINE | ID: mdl-31771574

RESUMO

BACKGROUND: Past studies emphasized the possible cultural influence on attitudes regarding reprogenetics and reproductive risks among medical students who are taken to be "future physicians." These studies were crafted in order to enhance the knowledge and expand the boundaries of cultural competence. Yet such studies were focused on MS from relatively marginalized cultures, namely either from non-Western developing countries or minority groups in developed countries. The current study sheds light on possible cultural influences of the dominant culture on medical students in two developed countries, potentially with different dominant cultures regarding reprogenetics and reproductive risks: Israel and Croatia. METHODS: Quantitative-statistical analyses were employed, based on anonymous questionnaires completed by 150 first year medical students in Israel and Croatia. The questionnaires pertained to the knowledge and attitudes regarding genetics, reproduction and reproductive risks. These questionnaires were completed before the students were engaged in learning about these topics as part of the curriculum in their medical school. RESULTS: Substantial differences were revealed between the two groups of medical students. Israeli medical students were less tolerant regarding reproductive risks and more knowledgeable about genetics and reproductive risks than Croatian medical students. For example, while nearly all Israeli medical students (96%) disagreed with the idea that "Screening for reproductive risks in prospective parents is wrong," less than 40% of their Croatian counterparts shared a similar stance. Similarly, all (100%) Israeli medical students correctly observed that "A carrier of a recessive genetic disease actually has the disease" was wrong, as opposed to only 82% of Croatian students. CONCLUSIONS: By linking applicable theoretical literature to these findings, we suggest that they may reflect the hidden influence of the dominant culture in each country, disguised as part of the "culture of medicine." Acknowledging and learning about such influence of the dominant culture, may be an important addition to the training of medical students in cultural competence, and specifically their cultural awareness. Such an acknowledgement may also pave the road to drawing the attention of existing physicians regarding a less known yet an important aspect of their cultural competence, insofar as the cultural awareness component is concerned.


Assuntos
Competência Cultural , Pesquisa em Genética/ética , Testes Genéticos/ética , Técnicas de Reprodução Assistida/ética , Estudantes de Medicina/psicologia , Adulto , Conscientização , Croácia , Diversidade Cultural , Feminino , Aconselhamento Genético/ética , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Israel , Masculino , Diagnóstico Pré-Implantação/ética , Estudos Prospectivos , Fatores Socioeconômicos , Adulto Jovem
16.
Public Health Genomics ; 22(5-6): 162-173, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31779000

RESUMO

BACKGROUND: Nutrigenetic tests are often considered to be less serious compared to other health-related genetic tests, although they share similar ethical concerns. Nutrigenetic tests are mainly available through direct-to-consumer genetic testing (DTC GT) and increasing in popularity. OBJECTIVE: To analyze the contents of nutrigenetic DTC GT websites with respect to the adequacy of the information provided to support a well-informed decision of purchasing the tests. METHODS: The websites of DTC GT companies selling nutrigenetic tests that could be ordered online without involving any healthcare professional, available in English, marketing tests in Europe, the USA, Australia, or Canada, and accessible from Finland were included in the study (n = 38). Quantitative and qualitative content analyses of the websites were carried out with the help of a codebook. RESULTS: Of the 38 websites, 8 included a clearly identifiable and easy-to-find information section about genetics. The quality and contents of these sections were often insufficient and/or misleading. Fourteen websites had specific sections discussing the risks related to GT, and on 13 signed informed consent was requested for GT. Furthermore, only 2 of the companies offered any kind of pretest consultation and 13 offered mostly separately charged posttest consultation. 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. CONCLUSION: The structure of the websites and the amount and quality of the content therein do not support a well-informed decision.


Assuntos
Informação de Saúde ao Consumidor/normas , Triagem e Testes Direto ao Consumidor , Internet , Nutrigenômica , Austrália , Canadá , Tomada de Decisões , Triagem e Testes Direto ao Consumidor/ética , Europa (Continente) , Testes Genéticos/ética , Humanos , Consentimento Livre e Esclarecido/normas , Marketing/ética , Estados Unidos
17.
Pediatrics ; 144(6)2019 12.
Artigo em Inglês | MEDLINE | ID: mdl-31719124

RESUMO

The BabySeq Project is a study funded by the National Institutes of Health and aimed at exploring the medical, behavioral, and economic impacts of integrating genomic sequencing into the care of both healthy newborns and newborns who are sick. Infants were randomly assigned to receive standard of care or standard of care plus sequencing. The protocol and consent specified that only childhood-onset conditions would be returned. When 1 child was found to carry a BRCA2 mutation despite a negative family history, the research team experienced moral distress about nondisclosure and sought institutional review board permission to disclose. The protocol was then modified to require participants to agree to receive results for adult-onset-only conditions as a precondition to study enrollment. The BabySeq team asserted that their new protocol was in the child's best interest because having one's parents alive and well provides both an individual child benefit and a "family benefit." We begin with a short description of BabySeq and the controversy regarding predictive genetic testing of children for adult-onset conditions. We then examine the ethical problems with (1) the revised BabySeq protocol and (2) the concept of family benefit as a justification for the return of adult-onset-only conditions. We reject family benefit as a moral reason to expand genomic sequencing of children beyond conditions that present in childhood. We also argue that researchers should design their pediatric studies to avoid, when possible, identifying adult-onset-only genetic variants and that parents should not be offered the return of this information if discovered unless relevant for the child's current or imminent health.


Assuntos
Testes Genéticos/ética , Triagem Neonatal/ética , Triagem Neonatal/psicologia , Pais/psicologia , Sequenciamento Completo do Exoma/ética , Testes Genéticos/normas , Humanos , Recém-Nascido , Triagem Neonatal/normas , Análise de Sequência de DNA/ética , Análise de Sequência de DNA/normas , Sequenciamento Completo do Exoma/normas
18.
Genet Test Mol Biomarkers ; 23(12): 857-864, 2019 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-31718291

RESUMO

Introduction: Psychiatric genetic research has seen progress in identifying genetic risk variants associated with major mental disorders. Testing with preventive purposes is likely to be offered to high-risk individuals in the near future. It is important that genetic testing and counseling align with the interests of the patients, and these interests are likely to vary among countries and cultures. Aim: The present study aimed to compare the attitudes toward psychiatric genetic research and genetic testing in Denmark and Cuba. Materials and Methods: A survey, culturally adapted for each country, was administered to a pool of students, patients with depression, and the closest relatives of these patients. A total of 491 stakeholders from Denmark and 720 from Cuba were included in the study. Results: Significant differences between the two populations were found for general knowledge about psychiatric genetic research, whom to offer genetic testing, and to whom to entrust with psychiatric genetic information. Cuban stakeholders were more likely to feel uncomfortable about psychiatric genetic research than the Danish stakeholders. This difference might be driven by the characteristics of the health systems, sociocultural factors, and lower genetic literacy in the Cuban population. Conclusion: This study is the first to compare attitudes toward psychiatric genetic testing between a Latin American country and a Nordic country. The results reported could be valuable when designing general guidelines for psychiatric genetic testing in the future.


Assuntos
Testes Genéticos/ética , Conhecimentos, Atitudes e Prática em Saúde/etnologia , Adolescente , Adulto , Idoso , Atitude , Cuba , Dinamarca , Depressão , Feminino , Privacidade Genética/ética , Pesquisa em Genética , Humanos , Masculino , Transtornos Mentais , Pessoa de Meia-Idade , Inquéritos e Questionários
19.
BMC Med Ethics ; 20(1): 84, 2019 11 21.
Artigo em Inglês | MEDLINE | ID: mdl-31752834

RESUMO

BACKGROUND: Citizen science is increasingly prevalent in the biomedical sciences, including the field of human genomics. Genomic citizen science initiatives present new opportunities to engage individuals in scientific discovery, but they also are provoking new questions regarding who owns the outputs of the research, including intangible ideas and discoveries and tangible writings, tools, technologies, and products. The legal and ethical claims of participants to research outputs become stronger-and also more likely to conflict with those of institution-based researchers and other stakeholders-as participants become more involved, quantitatively and qualitatively, in the research process. It is not yet known, however, how genomic citizen science initiatives are managing the interests of their participants in accessing and controlling research outputs in practice. To help fill this gap, we conducted an in-depth review of relevant policies and practices of U.S.-based genomic citizen science initiatives. METHODS: We queried the peer-reviewed literature and grey literature to identify 22 genomic citizen science initiatives that satisfied six inclusion criteria. A data collection form was used to capture initiative features, policies, and practices relevant to participants' access to and control over research outputs. RESULTS: This analysis revealed that the genomic citizen science landscape is diverse and includes many initiatives that do not have institutional affiliations. Two trends that are in apparent tension were identified: commercialization and operationalization of a philosophy of openness. While most initiatives supported participants' access to research outputs, including datasets and published findings, none supported participants' control over results via intellectual property, licensing, or commercialization rights. However, several initiatives disclaimed their own rights to profit from outputs. CONCLUSIONS: There are opportunities for citizen science initiatives to incorporate more features that support participants' access to and control over research outputs, consistent with their specific objectives, operations, and technical capabilities.


Assuntos
Ciência do Cidadão/ética , Pesquisa em Genética/ética , Genômica/ética , Propriedade/ética , Testes Genéticos/ética , Humanos , Propriedade Intelectual , Políticas
20.
Artigo em Inglês | MEDLINE | ID: mdl-31671746

RESUMO

In this commentary, we submit that the current emphasis of precision cancer screening and treatment (PCST) has been to provide and interpret the implications of "positive" screening results for those deemed to be at greatest risk for cancer or most likely to benefit from targeted treatments. This is an important, but proportionately small target group, regardless of the cancer context. Overlooked by this focus is the larger majority of those screened who receive "negative" results. We contend that for optimal dissemination of PCST, the complement of positive and negative results be viewed as an inseparable yin-yang duality with the needs of those who receive negative screening results viewed as important as those deemed to be at highest risk or derive targeted treatment benefit. We describe three areas where communication of negative PCST results warrant particular attention and research consideration: population-based family history screening, germline testing for hereditary cancer syndromes, and tumor testing for targeted cancer treatment decision-making. Without thoughtful consideration of the potential for negative results to have psychological and behavioral influences, there is a potential to create a "neglected majority". This majority may be inclined to misinterpret results, disseminate inaccurate information to family, dismiss the credibility of results, or become disillusioned with existing medical treatments.


Assuntos
Atitude Frente a Saúde , Detecção Precoce de Câncer/métodos , Neoplasias/diagnóstico , Neoplasias/terapia , Relações Profissional-Paciente , Revelação da Verdade , Detecção Precoce de Câncer/ética , Detecção Precoce de Câncer/psicologia , Testes Genéticos/ética , Testes Genéticos/métodos , Humanos , Terapia de Alvo Molecular/ética , Terapia de Alvo Molecular/métodos , Terapia de Alvo Molecular/psicologia , Neoplasias/genética , Neoplasias/psicologia , Relações Profissional-Paciente/ética , Medição de Risco , Revelação da Verdade/ética
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