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The advent of new genetic and genomic technologies may cause friction with the principle of respect for autonomy and demands a rethinking of traditional interpretations of the concept of informed consent. Technologies such as whole‐genome sequencing and micro‐array based analysis enable genome‐wide testing for many heterogeneous abnormalities and predispositions simultaneously. This may challenge the feasibility of providing adequate pre‐test information and achieving autonomous decision‐making. At a symposium held at the 11th World Congress of Bioethics in June 2012 (Rotterdam), organized by (...) |
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The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best of (...) |
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The Nobel prize-winning molecular biologist Walter Gilbert described the mapping and sequencing of the human genome as “the grail of molecular biology.” The implication, endorsed by enthusiasts for the new genetics, is that possessing a comprehensive knowledge of human genetics, like possessing the Holy Grail, will give us miraculous powers to heal the sick, and to reduce human suffering and disabilities. Indeed, the rhetoric invoked to garner public support for the Human Genome Project appears to appeal to the best of (...) |
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The notion of being a burden to others is mostly discussed in the context of care‐intensive diseases or end‐of‐life decisions. But the notion is also crucial in decision‐making at the beginning of life, namely regarding prenatal testing. Ever more sophisticated testing methods, especially non‐invasive prenatal testing (NIPT), allow the detection of genetic traits in the unborn child that may cause disabilities. A positive result often influences the decision of the pregnant women towards a termination of the pregnancy. Thus, critics claim (...) |
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Since the 1970s, prenatal testing has been integrated into many health care systems on the basis of two competing and largely irreconcilable rationales. The reproductive autonomy rationale focuses on nondirective counseling and consent as ways to ensure that women's decisions about testing and subsequent care are informed and free of undue pressures. It also represents an easily understandable and ethically convincing basis for widespread access to prenatal testing, since the value of autonomy is well established in Western bioethics and widely (...) |
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The U.S. Supreme Court declared procreation to be a fundamental right in the early twentieth century in a case involving Oklahoma's Habitual Criminal Sterilization Act, an act that permitted unconsented sterilization of individuals convicted of certain crimes. The right that the Court articulated in that case is a negative right: it requires that the government not place unjustified roadblocks in the way of people seeking to procreate, but it does not require the government to take positive steps to help people (...) |
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A new landscape of prenatal testing is presently developing, including new techniques for risk-reducing, non-invasive sampling of foetal DNA and drastically enhanced possibilities of what may be rapidly and precisely analysed, surrounded by a growing commercial genetic testing industry and a general trend of individualization in healthcare policies. This article applies a set of established ethical notions from past debates on PNT for analysing PNT screening-programmes in this new situation. While some basic challenges of PNT stay untouched, the new development (...) |
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As a gynecologic surgeon with a focus on infertility, I frequently hold complex discussions with patients, exploring with them the risks and benefits of surgical options. In the past, we physicians may have expected our patients to simply defer to our expertise and choose from the options we presented. In our contemporary era, however, patients frequently request options not favored by their physicians and even some they've found themselves online. In reproductive endocrinology and infertility, the range of options that may (...) |
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In a project The Hastings Center is now running on the future of prenatal testing, we are encountering clear examples, both in established law and in the practices of individual providers, of failures to respect women's reproductive autonomy: when testing is not offered to certain demographics of women, for instance, or when the choices of women to terminate or continue pregnancies are prohibited or otherwise not supported. But this project also raises puzzles for reproductive autonomy. We have learned that some (...) |
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A hallmark of good antenatal care is to respect prospective parent’s choices and provide information in a way that encourages their autonomy and informed decision making. In this paper, we analyse the meaning of autonomous and informed decision making from the theoretical perspective and attempt to show how those concepts are described among prospective parents in early pregnancy and in the public media in a society where NT screening is almost a norm. We use interviews with Icelandic prospective parents in (...) |
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