The Double Helix: Applying an Ethic of Care to the Duty to Warn Genetic Relatives of Genetic Information.

Genetic testing reveals information about a patient's health status and predictions about the patient's future wellness, while also potentially disclosing health information relevant to other family members. With the increasing availability and affordability of genetic testing and the integration of genetics into mainstream medicine, the importance of clarifying the scope of confidentiality and the rules regarding disclosure of genetic findings to genetic relatives is prime. The United Nations International Declaration on Human Genetic Data urges an appreciation for principles of equality, justice, solidarity and responsibility in the context of genetic testing, including a commitment to honoring the privacy and security of the person tested. Considering this global mandate and recent professional statements in the context of a legal amendment to patient privacy policies in Australia, a fresh scrutiny of the legal history of a physician's duty to warn is warranted. This article inquiries whether there may be anything ethically or socially amiss with a potential future recommendation for health professionals or patients to universally disclose particular cancer predisposition genetic diagnosis to genetic family members. While much of the discussion remains applicable to all genetic diagnosis, the article focuses on the practice of disclosure within the context of BRCA1/2 diagnosis. An 'ethic of care' interpretation of legal tradition and current practice will serve to reconcile law and medical policy on the issue of physician disclosure of genetic results to family members without patient consent.

Contemporary issues concerning informed consent in Japan based on a review of court decisions and characteristics of Japanese culture.

BACKGROUND: Since Japan adopted the concept of informed consent from the West, its inappropriate acquisition from patients in the Japanese clinical setting has continued, due in part to cultural aspects. Here, we discuss the current status of and contemporary issues surrounding informed consent in Japan, and how these are influenced by Japanese culture. DISCUSSION: Current legal norms towards informed consent and information disclosure are obscure in Japan. For instance, physicians in Japan do not have a legal duty to inform patients of a cancer diagnosis. To gain a better understanding of these issues, we present five court decisions related to informed consent and information disclosure. We then discuss Japanese culture through reviews of published opinions and commentaries regarding how culture affects decision making and obtaining informed consent. We focus on two contemporary problems involving informed consent and relevant issues in clinical settings: the misuse of informed consent and persistence in obtaining consent. For the former issue, the phrase "informed consent" is often used to express an opportunity to disclose medical conditions and recommended treatment choices. The casual use of the expression "informed consent" likely reflects deep-rooted cultural influences. For the latter issue, physicians may try to obtain a signature by doing whatever it takes, lacking a deep understanding of important ethical principles, such as protecting human dignity, serving the patient's best interest, and doing no harm in decision-making for patients.There is clearly a misunderstanding of the concept of informed consent and a lack of complete understanding of ethical principles among Japanese healthcare professionals. Although similar in some respects to informed consent as it originated in the United States, our review makes it clear that informed consent in Japan has clear distinguishing features. SUMMARY: Japanese healthcare professionals should aim to understand the basic nature of informed consent, irrespective of their attitudes about individualism, liberalism, and patient self-determination. If they believe that the concept of informed consent is important and essential in Japanese clinical settings, efforts should be made to obtain informed consent in an appropriate manner.

[Euthanasia in Belgium]. / La eutanasia en Bélgica.

The experience of the Netherlands in relation with the legalization and practice of euthanasia is better known in Spain than the Belgian experience in this matter. But the historical process of social debate in Belgium has many specific details which should be known by Spanish healthcare professionals, bioethicists, politicians and lawyers. This paper begins with a comparative analysis of both countries: Spain and Belgium and follows with a description of the milestones of the historical process of debating and, finally, passing the Belgian Law on Euthanasia in 2002. The next chapter consists of a description of the main contents of this important Law. The paper continues then with an approach to the epidemiology of the practice of euthanasia in Belgium and finishes with a description of the different positions of the actors of the process. Two positions are described more in depth: the opinion of the specialists in palliative care, and the opinion of the Catholic Church. The paper ends underlining the reason for the incorporation of the Belgian experience on euthanasia to the debate about the possibility of legalizing euthanasia in Spain.

Ovum donation: examining the new Israeli law.

Ovum donation affords countless couples that under natural circumstances would not be able to produce offspring the ability to carry out natural pregnancies. With advancements in biotechnology including egg collection and in vitro fertilization (IVF), physicians can now successfully implant fertilized embryos. Due to Israel's tremendous involvement in IVF for its own citizens, the national laws that govern egg donation are of great importance. On September 5th 2010, the Israeli Parliament (Knesset) passed a law that allows young women between the ages of 21 and 35 to donate their eggs for paid financial compensation. The new law allows infertile women between the ages of 18 and 54 to request egg donation and IVF, which will partially be covered under state insurance plans. This article provides a description of the new Israeli law regulating ovum donation and the practical, moral and ethical debate surrounding the new system.

Law-medicine interfacing: patenting of human genes and mutations.

Mutations, Single Nucleotide Polymorphisms (SNPs), deletions and genetic rearrangements in specific genes in the human genome account for not only our physical characteristics and behavior, but can lead to many in-born and acquired diseases. Such changes in the genome can also predispose people to cancers, as well as significantly affect the metabolism and efficacy of many drugs, resulting in some cases in acute toxicity to the drug. The testing of the presence of such genetic mutations and rearrangements is of great practical and commercial value, leading many of these genes and their mutations/deletions and genetic rearrangements to be patented. A recent decision by a judge in the Federal District Court in the Southern District of New York, has created major uncertainties, based on the revocation of BRCA1 and BRCA2 gene patents, in the eligibility of all human and presumably other gene patents. This article argues that while patents on BRCA1 and BRCA2 genes could be challenged based on a lack of utility, the patenting of the mutations and genetic rearrangements is of great importance to further development and commercialization of genetic tests that can save human lives and prevent suffering, and should be allowed.

Novo Código de Ética Médica

O Código de Ética vigente até abril de 2009 é o referente ao ano de 1988. É um código cujo conteúdo baseia-se na Constituição Federal, na legislação vigente no País e, sobretudo, no respeito aos direitos individuais e de cidadania. Considerando a grande evolução científica na área médica, a divulgação e a implantação dos princípios fundamentais da bioética e, também, que grandes demandas sociais expõem os médicos e envolvem a população, foi necessário um estudo profundo dessas questões, contemplando-as no Código de Ética Médica. Após exaustivos trabalhos em todos os estados da federação com assistência e apoio de uma comissão central, chegou-se a um texto apropriado, e, em reunião federativa com mais uma semana de discussão, foi aprovado o Novo Código de Ética Médica de 2009 - Resolução CFM 1.931 de 17/9/2009. Algumas mudanças merecem destaque: os princípios fundamentais foram ampliados, agora com 25 artigos; o capítulo que contempla a diceologia do código (direitos dos médicos) foi objeto de análise profunda e escrito em dez artigos; a parte deontológica (deveres dos médicos) teve 118 artigos e sua redação contempla os deveres dos médicos. Dentre os deveres dos médicos, alguns capítulos e artigos merecem destaque: o artigo primeiro do código (antigo art. 29) é um deles. Dentro da responsabilidade profissional, inclui-se: o parágrafo único, no qual a responsabilidade médica é sempre pessoal, não pode ser presumida. A figura da não-presunção não estava no Código de 1988 e a sequência dos capítulos foi mantida. O termo sigilo substituiu o termo segredo médico e ficou mais preciso. O cap. XII intitula-se Ensino e pesquisa englobando aspectos atuais. Auditoria e perícia médica ficaram em um único capítulo. O capítulo sobre atestado e boletim médico passou a se chamar Documentos Médicos, pois o termo é mais abrangente. Conclui-se que o Código de 2009 aperfeiçoou o de 1988. Ficou claro também que revisões serão necessárias a mais curto prazo

A critical analysis of criticisms of the Oregon Death with Dignity Act.

This article critically examines the validity of common criticisms of the Oregon Death with Dignity Act, primarily through reviewing published research and analyses. After summarizing the law and recent developments, 11 areas of concerns are examined: (a) the amount of data collected, (b) the availability of the data, (c) the reporting process, (d) protection of physicians, (e) terminal illness as a requirement, (f) the amount of data on palliative care interventions, (g) data on lethal prescriptions, (h) data on psychological/psychiatric evaluations, (i) whether the decision to request medication is informed, (j) whether the request is voluntary, and (k) financial factors. The authors examine each of these areas of concern and find criticisms to be unfounded given the research and analyses conducted to date.