Reproductive Genetic Technologies Research Articles

Experiential knowledge of disability, impairment and illness: The reproductive decisions of families genetically at risk

As the capacities of Reproductive Genetic Technologies expand, would-be parents face an increasing number of reproductive decisions regarding testing and screening for different conditions. Several studies have acknowledged the role that 'experiential knowledge of disability' plays in arriving at decisions around the use of these technologies; however, there is a lack of clarity within this literature as to what constitutes 'experiential knowledge of disability' and an over-reliance on medical diagnoses as a shorthand to describe different types of experience. Drawing on both social model of disability theory and the literature on chronic illness, this article presents an analysis of data from an in-depth qualitative interview study with 64 people with an inheritable condition in their family, Spinal Muscular Atrophy, and reports their views around reproduction and Reproductive Genetic Technologies. An experiential typology is presented which demonstrates the way in which experiences of 'disability', 'embodied experiences of impairment' or 'embodied experiences of illness, death and bereavement' are strategically privileged in accounts of reproductive decisions, in order to validate reproductive decisions taken, and, specifically, justify use (or non-use) of Reproductive Genetic Technologies. By highlighting the experiential categories within which participants embedded their reproductive decisions, this article draws attention to the porous and collapsible nature of diagnostic categories in the context of reproductive decision-making and genetic risk, and suggests new ways of researching 'experiential knowledge of disability' within these contexts which are able to account for the various contours of the embodied lived reality of life with 'disability'.

Socioscientific Issues and Multidisciplinarity in School Science Textbooks

The inclusion of socioscientific issues (SSIs) in the science curriculum is a well-established trend internationally. Apart from claims about its innate value, one of the rationales for this approach is its potential for helping to counter declining interest and participation. SSIs involve the use of science and are of interest to society, also raising ethical and moral dilemmas. Introducing such problems presents a significant and usually cross-disciplinary challenge to curriculum developers and teachers. The aim of this paper is to examine how this challenge has been met when judged against contemporary views of the issues concerned. It first explores how SSIs have been interpreted in an important and innovative science course for students aged 14–16 in England, entitled Twenty First Century Science. This paper analyses the Twenty First Century Science textbooks, focusing in detail on two SSIs, reproductive genetic technology and climate change. For each of these issues, the key ideas present in the social science literature surrounding the problems are outlined. This review is then used as an analytical framework to examine how the issues are presented in the textbooks. It is argued in this paper that the perspectives the textbooks take on these issues largely do not include perspectives from social science disciplines. It goes on to suggest that the development of future SSI-based curricula needs to take account of these wider, often interdisciplinary, perspectives.

MOVEMENT INTERSECTIONALITY

AbstractIntersectional analysis need not focus solely on differences within or between identity-based groups. Using intersectionality for cross movement mobilization reveals that, contrary to criticism for being divisive, attention to intersecting identities has the potential to create solidarity and cohesion. In this article, we elaborate this argument with a case study of the intersection of race, gender, and disability in genetic technologies as well as in organizing to promote a social justice approach to the use of these technologies. We show how organizing based on an intersectional analysis can help forge alliances between reproductive justice, racial justice, women's rights, and disability rights activists to develop strategies to address reproductive genetic technologies. We use the work of Generations Ahead to illuminate how intersectionality applied at the movement-building level can identify genuine common ground, create authentic alliances, and more effectively advocate for shared policy priorities.

The Perils of Progress

AbstractIn Contested Reproduction, John Evans outlines the results of a major piece of sociological research he has conducted. Evans suspects that reproductive genetic technologies will be a significant issue in coming cultural conflicts in the United States and that religious perspectives will play an important role in determining the shape these conflicts take. If one believes that we are hopelessly and bitterly divided on such issues, then the shape of our future conflicts may simply pit one entrenched side against another. Evans’ findings suggest that ordinary religious believers in the United States have rather complex views about these technologies—more shades of gray than black or white. He concludes that the coming conflicts may be neither as insuperable nor as hopeless as we sometimes suppose. Serious exchange, and not just caricature or dismissal, may characterize even our deep disagreements.Perhaps so. But a reading of Progress in Bioethics, a collection of essays edited by Jonathan D. Moreno and Sam Berger, might give one pause here, and not because of anything it reveals about the views of religious believers.

USE OR REFUSE REPRODUCTIVE GENETIC TECHNOLOGIES: WHICH WOULD A ‘GOOD PARENT’ DO?

A number of authors have objected to potential parents' use of reproductive genetic technologies on the grounds that the use of these technologies reflects a morally problematic attitude toward parenting. More specifically, proponents of this view have argued that such a choice is inconsistent with the unconditional acceptance that lies at the heart of praiseworthy parental attitudes. This paper offers a rebuttal of this view by arguing that it is possible for a parent to exhibit unconditional acceptance of the child herself without accepting each of that child's traits. If this is true, the use of reproductive genetic technologies does not inherently undermine appropriate parental attitudes. Further, by working to change some of a child's specific traits, a parent may instead exemplify an aspirational aspect of praiseworthy parenting and so demonstrate appropriate parental attitudes.

Contested reproduction: genetic technologies, religion, and public debate

Scientific breakthroughs have led us to a point where soon we will be able to make specific choices about the genetic makeup of our offspring. In fact, this reality has arrived - and it is only a matter of time before the technology becomes widespread. Much like past arguments about stem-cell research, the coming debate over these reproductive genetic technologies (RGTs) will be both political and, for many people, religious. In order to understand how the debate will play out in the United States, John H. Evans conducted the first in-depth study of the claims made about RGTs by religious people from across the political spectrum, and Contested Reproduction is the stimulating result. Some of the opinions Evans documents are familiar, but others - such as the idea that certain genetic conditions produce a 'meaningful suffering' that is, ultimately, desirable - provide a fascinating glimpse of religious reactions to cutting-edge science. Not surprisingly, Evans discovers that for many people opinion on the issue closely relates to their feelings about abortion, but he also finds a shared moral language that offers a way around the unproductive polarization of the abortion debate and other culture-war concerns. Contested Reproduction is a prescient, profound look into the future of a hot-button issue.

Attitudes toward childbearing and prenatal testing in individuals undergoing genetic testing for Lynch Syndrome

To examine attitudes toward childbearing and prenatal genetic testing among individuals at risk for Lynch syndrome (LS), the most common type of hereditary colorectal cancer. Individuals undergoing clinical genetic testing for mismatch repair (MMR) gene mutations completed written questionnaires before and after testing. 161 of 192 (84%) eligible individuals participated in the study. Mean age was 46 years (range 20-75), 71% were female, 53% had a personal diagnosis of cancer, and 68% had children. Eighty percent worried about their children's risk for developing cancer; however only 9% reported their decision to have children was affected by their family history of cancer. When asked whether providing prenatal testing to carriers of MMR gene mutations was ethical, 66% (86/130) of respondents agreed/strongly agreed, 25% (32) were neutral and 9% (12) disagreed/strongly disagreed. Of 48 individuals planning to have children in the future, 57% (27) intended to have children regardless of their genetic test result. If found to carry a MMR gene mutation that confirmed LS, 42% (20) would consider prenatal testing for a future pregnancy and 20% (7/35) of women would consider having children earlier in order to have prophylactic surgery to reduce their risk for gynecologic cancers. Individuals undergoing genetic testing for LS may utilize test results to make reproductive decisions. Clinicians should be prepared to discuss options of reproductive genetic technologies during counseling of LS patients of childbearing age.

Deciding against disability: does the use of reproductive genetic technologies express disvalue for people with disabilities?

This paper focuses on one objection to the use of reproductive genetic technologies (RGTs): the argument known as the expressivist objection. According to this argument, the choice to use reproductive...

Religion and Reproductive Genetics: Beyond Views of Embryonic Life?

Advances in new reproductive genetic technologies have spawned a very polarized public and political debate. As with the abortion debate, most formal opposition to these technologies comes from religious organizations that are concerned about embryonic and fetal life. In this article we conduct an analysis of the first nationally representative opinion survey on religion and reproductive genetics. We find, as in the abortion debate, that evangelicals, fundamentalists, and traditionalist Catholics are more opposed than more liberal religious groups. When we compare respondents with the same views on embryonic life, we find that differences remain in the level of approval for genetic technologies, suggesting that there is more to this debate than concern about embryos. We also find that religious conservatives are more distinct from the religious nonattenders in their views of health objectives of reproductive genetic technologies and less distinct in their views of improvement objectives.

Understanding Risks and Benefits in Research on Reproductive Genetic Technologies

Research protocols must have a reasonable balance of risks and anticipated benefits to be ethically and legally acceptable. This article explores three characteristics of research on reproductive genetic technologies that complicate the assessment of the risk-benefit ratio for such research. First, a number of different people may be affected by a research protocol, raising the question of who should be considered to be the subject of reproductive genetic research. Second, such research could involve a wide range of possible harms and benefits, making the evaluation and comparison of those harms and benefits a challenging task. Finally, the risk-benefit ratio for this type of research is difficult to estimate because such research can have unpredictable, long-term implications. The article aims to facilitate the assessment of risk-benefit ratios in research on reproductive genetic technologies by proposing and defending some guidelines for dealing with each of these complicating factors.

Religious Belief, Perceptions of Human Suffering, and Support for Reproductive Genetic Technology

Reproductive genetic technologies are becoming more controversial as they become more ubiquitous. The opponents of these technologies are largely religious groups, a fact that leads to the question of why religious groups would be more opposed to these technologies than others. Since all of these technologies are justified by their ability to relieve suffering of some kind, it is hypothesized that the actively religious have a notion of suffering different from that of advocates for these technologies, and this different notion of suffering leads to opposition to the technologies. In this article I report on a qualitative interview study of the religiously active in the United States. I find that the religiously active do have views of suffering that are distinct from the medical consensus, and these views are related to people's conclusions about the advisability of reproductive genetic technologies.

Implications for Providers and Patients: A Comment on the Regulatory Framework for Preimplantation Genetic Diagnosis in New Zealand

Preimplantation Genetic Diagnosis (PGD) is a reproductive genetic technology that was first introduced into clinical medicine over a decade and a half ago. 2 PGD enables the detection of genetic anomalies in embryos created via IVF prior to implantation. On the basis of the genetic information derived from PGD, choices may be made as to which embryo, or embryos, are transferred to a woman's uterus. This technology was undertaken for the first time in New Zealand in late 2005. The provision of PGD by fertility services in New Zealand was preceded by the formulation of Guidelines on Preimplantation Genetic Diagnosis by the National Ethics Committee on Assisted Human Reproduction. Since the introduction of the Human Assisted Reproductive Technology Act 2004, these have been designated as interim Guidelines of the statutory policy-making body created by the Act, the Advisory Committee on Assisted Reproductive Technology. An Order in Council has since authorised a category of PGD, in almost identical terms to those specified in the Guidelines, which may be carried out as a routine clinical procedure without external oversight. This article examines the scope of these regulatory initiatives. It argues that there are inherent uncertainties in both the Guidelines and the Order in Council which may pose difficulties for providers and patients in the clinical context.

Making Babies: Reproductive Decisions and Genetic Technologies

Making Babies: Reproductive Decisions and Genetic Technologies

Exploring the discourse between genetic counselors and Orthodox Jewish community members related to reproductive genetic technology

Objective Genetic technology is complex, relatively new and involves sensitive issues pertaining to personhood and reproduction. While ethno cultural barriers to genetic care are well documented, little attention has been devoted to understanding religious beliefs pertaining to genetic services. This study evaluated the discourse between genetic counselors and Orthodox Jewish community members’ perceptions of reproductive genetic technology. Methods A cross section of the Orthodox Jewish community was sampled through purposeful and snowball recruitment for in-depth interviews with key informants. Results Genetic counselors felt apprehensive about serving the Orthodox Jewish population and were unaware of social norms, religious and cultural practices unique to this population. Similarly, Orthodox Jewish consumers exhibited major misgivings about genetic testing. Importantly, stereotypic expectations by both counselors and consumers exacerbated existing communication difficulties. Conclusion Cultural differences and poor communication between genetic counselors and Orthodox Jewish community members impeded the ability of the Orthodox Jewish community to utilize genetic services. Practice implications This work illuminates complex issues pertaining to medical encounters between providers and patients with ideological, social and cultural differences. In particular, issues of access to care and transcultural competence in serving religious minority groups, such as Orthodox Jews are presented. On the whole, this group is largely unrecognized in the minority health literature in spite of barriers and challenges that they face. Findings of this study may have application to other cloistered and highly observant religious groups when dealing with reproductive technology and other populations with diverse values, beliefs and behaviors pertaining to reproductive health.

Opinions about new reproductive genetic technologies: Hopes and fears for our genetic future

To identify underlying beliefs and values shaping Americans' opinions about the appropriate use of new reproductive genetic technologies (RGTs), including preimplantation genetic diagnosis, hypothetical genetic modification, and sperm sorting for sex selection. Scenarios with ethical dilemmas presented to 21 focus groups organized by sex, race/ethnicity, religion, age, education, and parental status. A city in each state: California, Colorado, Massachusetts, Michigan, and Tennessee. One hundred and eighty-one paid volunteers, ages 18 to 68. None. Beliefs and values that shape participants' opinions about the appropriate use of new RGTs. Regardless of demographic characteristics, focus group participants considered six key factors when determining the appropriateness of using RGTs: [1] whether embryos would be destroyed; [2] the nature of the disease or trait being avoided or sought; [3] technological control over "natural" reproduction; [4] the value of suffering, disability, and difference; [5] the importance of having genetically related children; and [6] the kind of future people desire or fear. Public opinions about the appropriate use of RGTs are shaped by numerous complementary and conflicting values beyond classic abortion arguments. Clinicians and policy-makers have the opportunity to consider these opinions when creating messages and crafting policy.

Drawing the line: public, patient, and professional perspectives on reproductive genetic technologies

Drawing the line: public, patient, and professional perspectives on reproductive genetic technologies

Reproductive genetic technologies: Exploring Ethical and Policy Implications

reproductive genetic technologies: Exploring Ethical and Policy Implications

Recent advances in reproductive genetic technologies.

New possibilities for the diagnosis and treatment of reproductive and genetic disorders are becoming available as a result of a series of recent technical advances. Intracytoplasmic sperm injection (ICSI) allows treatment of numerous infertile men whose sperm cannot penetrate the egg to initiate fertilization. Molecular genetic testing provides clients of reproductive age with additional information that permits prevention of genetic diseases such as fragile X syndrome, the leading cause of inherited mental retardation. Preimplantation genetic testing (PGT) offers couples who carry genetic disorders the prospect of having children with a greatly decreased risk of initiating a pregnancy involving an affected individual. Flow-cytometric sperm separation offers a new, effective approach for prevention of X-linked genetic disorders. Two major causes of recurrent pregnancy loss (RPL) involve recurrent trisomies and immunological disorders. Of the latter, 70% of studied populations of patients can attain live births with simple treatment protocols. Maternal serum assays involving multiple markers reduce both false positives and false negatives in detection of trisomies. Despite these advances in research, many safe and effective methods of diagnosis and treatment remain under-utilized in the clinical arena.

Reproductive technologies for prenatal diagnosis.

Reproductive genetic technology provides unprecedented opportunities for pregnant women and their families to obtain direct information about the genetic makeup of their developing fetus. Ultrasonography, maternal serum markers, amniocentesis, chorionic villus sampling and percutaneous umbilical blood sampling already offer opportunities for prenatal diagnosis in early pregnancy. New techniques, such as preimplantation, prenatal diagnosis and fetal cell sorting offer opportunities for prenatal diagnosis in even earlier stages of pregnancy.

Reproductive genetic testing: implications for nursing education.

Reproductive genetic testing technologies are expanding at an exponential rate. Nurses are increasingly being called upon to provide these services to women. This paper discusses the status of nursing education in genetics and identifies immediate needs for nurses in order to be adequately prepared to respond to these increased demands. The future role of nurses in providing genetic services is delineated.