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State legislative efforts to regulate use and potential misuse of genetic information.
The purpose of this study was to review existing and proposed legislation specifically intended to regulate the collection, use, and potential misuse of genetic data. The study encompasses laws relating to confidentiality, informed consent, discrimination, and related issues. It excludes from consideration legislation relating to medical records generally that may bear indirectly on genetic information. It also excludes both legislation relating to the regulation of DNA data collection for law enforcement purposes and state laws relating to the confidentiality of data collected by newborn-screening programs. While relatively few laws that explicitly regulate the treatment of genetic information have been enacted to date, a considerable amount of activity is currently underway in the nation's legislatures. Although most of the bills under consideration are not comprehensive in scope, they reflect a growing societal awareness that the uncontrolled dissemination and use of genetic data entails significant risks.
What's the use? Law and authority in patenting human genetic material.
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Approaching surrogate motherhood: reconsidering difference.
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Declining sex ratio: role of society, technology and government regulation in Faridabad district, Haryana.
BACKGROUND: A declining sex ratio at birth has been documented during censuses in India. The decline is especially more in the northern states of Haryana and Punjab. We attempted to assess the role of society (preference for a male child, awareness and acceptability of the practice of sex determination), technology (availability and affordability) and government regulation in the adverse ratio for girls in the Ballabgarh block of Haryana in northern India. METHODS: The population (about 80 000) in the Ballabgarh block has been under constant demographic surveillance for the past 30 years and the data are stored electronically. This was used to determine the sex ratio at birth in the area since 1990. The data on availability of ultrasound machines was collected from the district authorities, as registration of these machines was made mandatory under the Prenatal Diagnostic Techniques Act, 1994. We interviewed 160 mothers and grandmothers to determine the awareness and acceptability of sex determination methods and practices. RESULTS: The demographic data for the past 10 years showed a declining sex ratio-from 881 in 1990-91 to 833 in 2000-01. The data support the view that in the initial part of this period, ultrasound was used for sex determination of all-order births but subsequently was used more in higher-order births. Our interviews with the mothers and grandmothers of the area showed that the practice of sex determination is prevalent and the attitude of the society is ambivalent. The increased availability of ultrasound machines in the area in the past 10 years corresponded to the decline in sex ratio. When the government made the practice illegal, the sex ratio improved only to fall again as the law was not implemented. Later years saw a more stringent implementation of the law and the sex ratio improved again. CONCLUSION: There is a 'demand' for sex determination technology and, therefore, this would continue to be 'supplied'. At most the 'supply' can be regulated. Social engineering efforts need to be targeted at reducing the demand if the sex ratio is to be improved.
The animal farm philosophy of genetic discrimination.
The paper by Dr. Gregor Wolbring addresses the issue of genetic discrimination from disabled people's rights perspective asking a) what the interpretation of genetic discrimination and the scope of Anti Genetic discrimination laws and law proposals is and b) whether the scope and interpretation of genetic discrimination and Anti Genetic discrimination laws and law proposal lead to more protection for-or increased discrimination against- disabled people"
Voluntary interruption of pregnancy in Europe: medico-legal issues and ethical approach to the regulation.
The legislative criteria of the various European countries, as far as voluntary interruption of pregnancy is concerned, differ in the levels of severity employed by the law of the single nations. The authors analyze the legislation of some of European countries and, as a result, they identify countries that may be defined as more tolerant and others where the law is more restrictive. Italy is to be dealt with separately, because its legislation as regards this subject presents a greater interpretative ambiguity. In the end they analyze religious attitudes underlying the laws on voluntary interruption of pregnancy, because of the suspicion that the teachings of both Catholic and Protestant theology have influenced the differences in the quality of the law in force as regards termination of pregnancy is certainly well-grounded, and on the other hand the philosophy of law certainly owes its meditation both to theology and to the teachings of the Catholic Church.
The moral status of wrongful life claims.
A wrongful life action is a claim brought by a disabled child who asserts that but for a physician's negligence he or she would not have been born, thereby being spared the suffering of life. The action is inherently controversial because the alternative to an impaired life is non-existence. Lord Griffiths has described such claims as 'utterly offensive; there should be rejoicing that the hospital's mistake bestowed the gift of life upon the child.' This paper cuts through the rhetoric that the debate has generated and analyses whether there is a sound doctrinal basis for recognizing wrongful life actions.
Classical liberalism, the constitution, and abortion policy: can government be both pro-choice and anti-abortion?
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A conceptual framework for genetic policy: comparing the medical, public health, and fundamental rights models.
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Genetic exceptionalism & legislative pragmatism.
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Disentangling privacy from property: toward a deeper understanding of genetic privacy.
With the mapping of the human genome, genetic privacy has become a concern to many. People care about genetic privacy because genes play an important role in shaping us--our genetic information is about us, and it is deeply connected to our sense of ourselves. In addition, unwanted disclosure of our genetic information, like a great deal of other personal information, makes us vulnerable to unwanted exposure, stigmatization, and discrimination. One recent approach to protecting genetic privacy is to create property rights in genetic information. This Article argues against that approach. Privacy and property are fundamentally different concepts. At heart, the term "property" connotes control within the marketplace and over something that is disaggregated or alienable from the self. "Privacy," in contrast, connotes control over access to the self as well as things close to, intimately connected to, and about the self. Given these different meanings, a regime of property rights in genetic information would impoverish our understanding of that information, ourselves, and the relationships we hope will be built around and through its disclosure. This Article explores our interests in genetic information in order to deepen our understanding of the ongoing discourse about the distinction between property and privacy. It develops a conception of genetic privacy with a strong relational component. We ordinarily share genetic information in the context of relationships in which disclosure is important to the relationship--family, intimate, doctor-patient, researcher-participant, employer-employee, and insurer-insured relationships. Such disclosure makes us vulnerable to and dependent on the person to whom we disclose it. As a result, trust is essential to the integrity of these relationships and our sharing of genetic information. Genetic privacy can protect our vulnerability in these relationships and enhance the trust we hope to have in them. Property, in contrast, by connoting commodification, disaggregation, and arms-length dealings, can negatively affect the self and harm these relationships. This Article concludes that a deeper understanding of genetic privacy calls for remedies for privacy violations that address dignitary harm and breach of trust, as opposed to market harms, as the property model suggests.
Sex selection: regulating technology enabling the predetermination of a child's gender.
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State of Michigan in the Circuit Court for the County of Oakland.
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Mandatory treatment for drug use during pregnancy.
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