File Name: legal and ethical issues in genetics .zip
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NCBI Bookshelf. Each new genetic test that is developed raises serious issues for medicine, public health, and social policy regarding the circumstances under which the test should be used, how the test is implemented, and what uses are made of its results.
Should people be allowed to choose or refuse the test, or should it be mandatory, as newborn screening is in some states? Should people be able to control access to the results of their tests? If test results are released to third parties such as employers or insurers, what protections should be in place to ensure that people are not treated unfairly because of their genotype? The answers to these questions depend in part on the significance given to four important ethical and legal principles: autonomy, confidentiality, privacy, and equity.
A review of the meaning of those concepts and how they are currently protected by the law provides a starting point for the development of recommendations on the degree of control people should have in deciding whether to undergo genetic testing and what uses should be made of the results.
The task is a pressing one. In a national probability survey of the public, sponsored by the March of Dimes, 38 percent of respondents said that new types of genetic testing should be stopped altogether until the privacy issues are settled. This chapter reviews some of the conflicts that will arise in the research and clinical settings, and suggests general principles that should be the starting point for policy analyses in this evolving field.
Since many of the references in this chapter are legal citations, its references appear in legal style as numbered end notes. Autonomy can be defined as self-determination, self-rule, or self-governance. Autonomous agents or actions presuppose some capacity of reasoning, deciding, and willing. Moral, social, and legal norms establish obligations to respect autonomous agents and their choices.
Respect for personal autonomy implies that agents have the right or power to be self-governing and self-directing, without outside control. In the context of genetic testing and screening, respect for autonomy refers to the right of persons to make an informed, independent judgment about whether they wish to be tested and then whether they wish to know the details of the outcome of the testing. Autonomy is also the right of the individual to control his or her destiny, with or without reliance on genetic information, and to avoid interference by others with important life decisions, whether these are based on genetic information or other factors.
Respect for autonomy also implies the right of persons to control the future use of genetic material submitted for analysis for a specific purpose including when the genetic material itself and the information derived from that material may be stored for future analysis, such as in a DNA bank or registry file.
Even though respect for autonomy is centrally important in our society, it is not absolute. It can be overridden in some circumstances, for example, to prevent serious harm to others, as is the case in mandatory newborn screening for phenylketonuria PKU and hypothyroidism. The legal concept of autonomy serves as the basis for numerous decisions protecting a person's bodily integrity.
In particular, cases have held that competent adults have the right to choose whether or not to undergo medical interventions.
People also have a right to be informed about and to control the subsequent use of tissue that has been removed from their bodies. In such a situation, the patient's autonomy is compromised even if the sample is used anonymously in the subsequent use.
A report from the Office of Technology Assessment similarly stressed the importance of knowledge and consent:. The consent of the patient is required to remove blood or tissue from his or her body, and also to perform tests, but it is important that the patient be informed of all the tests which are done and that a concern for the privacy of the patient extends to the control of tissues removed from his or her body.
Among the various definitions of privacy, one broad definition captures its central element: privacy is "a state or condition of limited access to a person. They have privacy if they are left alone and do not suffer unauthorized intrusion by others. Once persons undergo genetic tests, privacy includes the right to make an informed, independent decision about whether—and which—others may know details of their genome e.
Various justifications have been offered for rules of privacy. First, some philosophers argue that privacy rights are merely shorthand expressions for a cluster of personal and property rights, each of which can be explicated without any reference to the concept of privacy.
In making this argument, Judith Jarvis Thomson holds that privacy rights simply reflect personal and property rights, such as the rights not to be looked at, not to be overheard, and not to be caused distress. A second justification holds that rights to privacy are important instruments or means to other goods, including intimate relations such as trust and friendship.
Being able to control access to themselves enables people to have various kinds of relationships with different people, rather than being equally accessible to all others.
A third approach finds the basis for rights to privacy in respect for personal autonomy. Decisional privacy is often very close to personal autonomy. The language of personal autonomy reflects the idea of a domain or territory of self-rule, and thus overlaps with zones of decisional privacy.
Whatever their rationale or justification, rights of privacy are the subject of ongoing debate about their scope and weight. However, their scope is not unlimited, and they do not always override all other competing interests, such as the interests of others. In the legal sphere, the principle of privacy is an umbrella concept encompassing issues of both autonomy and confidentiality. The right to make choices about one's health care is protected, in part, by the right to privacy guaranteed by the U.
Constitution, as well as state constitutions. This includes a right to make certain reproductive choices, 13 such as whether to use genetic testing.
An entirely different standard of privacy protects personal information. A few court decisions find protection for such information under the constitutional doctrine of privacy, 15 but more commonly, privacy protection against disclosure of personal information is found under common law tort principles.
Confidentiality as a principle implies that some body of information is sensitive, and hence, access to it must be controlled and limited to parties authorized to have such access. The information provided within the relationship is given in confidence, with the expectation that it will not be disclosed to others or will be disclosed to others only within limits.
The state or condition of nondisclosure or limited disclosure may be protected by moral, social, or legal principles and rules, which can be expressed in terms of rights or obligations. In health care and various other relationships, we grant others access to our bodies. They may touch, observe, listen, palpate, and even physically invade. They may examine our bodies as a whole or in parts; and parts, such as tissue, may be removed for further study, as in some forms of testing.
Privacy is necessarily diminished when others have such access to us; rules of confidentiality authorize us to control and thus to limit further access to the information generated in that relationship. For example, rules of confidentiality may prohibit a physician from disclosing some information to an insurance company or an employer without the patient's authorization.
Rules of confidentiality appear in virtually every code or set of regulations for health care relationships. Their presence is not surprising, because such rules are often justified on the basis of their instrumental value: if prospective patients cannot count on health care professionals to maintain confidentiality, they will be reluctant to allow professionals the full and complete access necessary for diagnosis and treatment. Hence, rules of confidentiality are indispensable for patient and social welfare; without those rules, people who need medical, psychiatric, or other treatment will refrain from seeking or fully participating in it.
Another justification for rules of confidentiality is based on the principles of respect for autonomy and privacy, above. Respecting persons involves respecting their zone of privacy and accepting their decisions to control access to information about them. When people grant health care professionals access to them, they should retain the right to determine who else has access to the information generated in that relationship.
Hence, the arguments for respect for autonomy and privacy support rules of confidentiality. Finally, duties of confidentiality often derive from explicit or implicit promises in the relationship. For instance, if the professional's public oath or the profession's code of ethics promises confidentiality of information, and the particular professional does not specifically disavow it, then the patient has a right to expect that information generated in the relationship will be treated as confidential.
There are at least two distinct types of infringements of rules of confidentiality. On the one hand, rules of confidentiality are sometimes infringed through deliberate breaches. On the other hand, rules of confidentiality are often infringed through carelessness, for example, when health care professionals do not take adequate precautions to protect the confidential information. Some commentators argue that both carelessness and modern practices of health care have rendered medical confidentiality a "decrepit concept," since it is compromised routinely in the provision of health care.
It is widely recognized that the rules of confidentiality are limited in at least two senses: 1 some information may not be protected, and 2 the rules may sometimes be overridden to protect other values. First, not all information is deemed confidential, and patients do not have a right to expect that such information will be protected from disclosure to others.
For example, laws frequently require that health care professionals report gunshot wounds, venereal diseases, and other communicable diseases such as tuberculosis. Second, health care professionals may also have a moral or legal right and sometimes even an obligation to infringe rules of confidentiality, for example, to prevent a serious harm from occurring. In such cases, rules of confidentiality protect the information, but they can be overridden in order to protect some other value.
Judgments about such cases depend on the probability of serious harm occurring unless confidentiality is breached. Any justified infringements of rules of confidentiality should satisfy the conditions identified earlier in the discussion of justified infringements of the principle of respect for autonomy. The legal concept of confidentiality focuses on the information that people provide to their physicians. The protection of confidentiality is thought to serve an important public health goal in encouraging people to seek access to health care.
It is thought that the patient's interest can be served only in an atmosphere of total frankness and candor. In fact, the first doctor-patient confidentiality statute was passed in in New York during the smallpox epidemic to encourage people to seek health care. Various legal decisions have protected confidentiality of health care information, 21 as have certain state and federal statutes. Confidentiality of health care information is also protected because disclosure of a person's medical condition can cause harm to him or her.
An alternative set of legal principles-those penalizing discrimination see below -protects people against unfair uses of certain information. Issues of justice, fairness, and equity crop up in several actions, practices, and policies relating to genetic testing.
It is now commonplace to distinguish formal justice from substantive justice. Formal justice requires treating similar cases in a similar way. Standards of substantive or material justice establish the identity of the relevant similarities and differences and the appropriate responses to those similarities and differences.
For instance, a society has to determine whether to distribute a scarce resource such as health care according to persons' differences in need, social worth, or ability to pay. One crucial question is whether genetic disorders or predispositions provide a basis for blocking access to certain social goods, such as employment or health insurance. Most conceptions of justice dictate that employment be based on the ability to perform particular tasks effectively and safely. For these conceptions, it is unjust to deny employment to someone who meets the relevant qualifications but also has a genetic disease.
Frequently these questions of employment overlap with questions of health insurance. Practices of medical underwriting in health insurance reflect what is often called "actuarial fairness"-that is, grouping those with similar risks together so insurers can accurately predict costs, and set fair and sufficient premium rates. Although actuarial fairness may be intuitively appealing, critics argue that it does not express moral or social fairness.
According to Norman Daniels, there is "a clear mismatch between standard underwriting practices and the social function of health insurance" in providing individuals with resources for access to health care 22 see Chapter 7.
The fundamental argument for excluding genetic discrimination in health insurance amounts to an argument for establishing a right to health care.
One of the central issues in debates about the distribution of health care is one's view of the "natural lottery," in particular, a "genetic lottery. But even if health needs are largely undeserved because of the role of chance, society's response to those needs may vary, as H. Tristram Engelhardt notes, depending on whether it views those needs as unfair or as unfortunate.
Other individuals, voluntary associations, and even society may be motivated by compassion to try to meet those needs. If, however, the needs are viewed as unfair as well as unfortunate, society may have a duty of justice to try to meet those needs.
One prominent argument for the societal provision of a decent minimum of health care is that, generally, health needs are randomly distributed and unpredictable, as well as overwhelming when health crises occur.
Not a MyNAP member yet? Register for a free account to start saving and receiving special member only perks. Each new genetic test that is developed raises serious issues for medicine, public health, and social policy regarding the circumstances under which the test should be used, how the test is implemented, and what uses are made of its results. Should people be allowed to choose or refuse the test, or should it be mandatory, as newborn screening is in some states? Should people be able to control access to the results of their tests? If test results are released to third parties such as employers or insurers, what protections should be in place to ensure that people are not treated unfairly because of their genotype? The answers to these questions depend in part on the significance given to four important ethical and legal principles: autonomy, confidentiality, privacy, and equity.
Genetics Pdf Notes. Characteristic of Genetic Code. About chromosomesChromosomes are the thread-like structures in cells that contain genes. Genetics is about families. He begins with a brief introduction of Gregor Mendel and his laws of segregation and independent assortment. Be sure to include which edition of the textbook you are using!. Introduction to the Genetics of Viruses.
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