伦理管理在人类辅助生殖技术中的应用与价值

辅助生殖技术（assisted reproduction technique,ART）的飞速发展给社会带来了复杂伦理难题。因此,在ART全过程中加强伦理管理并对其后果进行评价,具有深刻的内涵价值和深远的社会意义。只有发挥生殖医学伦理委员会作为一个工作机构的职能,在医患人群中加强ART技术基本原理及相关伦理原则的宣传教育,强化医学伦理的监督机制,落实充分的知情同意等措施,才能促使医患人群都能够自觉遵守优良的医学伦理道德规范,保证人类辅助生殖技术的健康发展,使ART发挥积极的、革命性的意义。     

Genetic Testing: The Appropriate Means for a Desired Goal?

Scientists, the medical profession, philosophers, social scientists, policy makers, and the public at large have been quick to embrace the accomplishments of genetic science. The enthusiasm for the new biotechnologies is not unrelated to their worthy goal. The belief that the new genetic technologies will help to decrease human suffering by improving the public’s health has been a significant influence in the acceptance of technologies such as genetic testing and screening. But accepting this end should not blind us to the need for an evaluation of whether a particular means is adequate to achieve it. Lack of such evaluation notwithstanding, discussions of the ethical, legal, and social implications have tended to presuppose that the development and implementation of genetic testing will be an appropriate means to reduce human suffering in significant ways. I argue here that such an assumption is mistaken. In part this is the case because human biology is more complex than sometimes it is made to appear in these debates. But, the idea that human suffering resulting from disease can be reduced in significant ways with the use of genetic testing also ignores the social contexts in which these technologies are being developed and implemented.     

Viral information

Viruses are major drivers of global biogeochemistry and the etiological agents of many diseases. They are also the winners in the game of life: there are more viruses on the planet than cellular organisms and they encode most of the genetic diversity on the planet. In fact, it is reasonable to view life as a viral incubator. Nevertheless, most ecological and evolutionary theories were developed, and continue to be developed, without considering the virosphere. This means these theories need to be to reinterpreted in light of viral knowledge or we need to develop new theory from the viral point-of-view. Here we briefly introduce our viral planet and then address a major outstanding question in biology: why is most of life viral? A key insight is that during an infection cycle the original virus is completely broken down and only the associated information is passed on to the next generation. This is different for cellular organisms, which must pass on some physical part of themselves from generation to generation. Based on this premise, it is proposed that the thermodynamic consequences of physical information (e.g., Landauer’s principle) are observed in natural viral populations. This link between physical and genetic information is then used to develop the Viral Information Hypothesis, which states that genetic information replicates itself to the detriment of system energy efficiency (i.e., is viral in nature). Finally, we show how viral information can be tested, and illustrate how this novel view can explain existing ecological and evolutionary theories from more fundamental principles.     

Communication of Genetic Information within Families: The Case for Familial Comity

Advances in genetic technologies raise a multitude of ethical issues, some of which give rise to novel dilemmas for medical practice. One of the most controversial problems arising in clinical genetics is that of confidentiality and who may disclose genetic health information. This paper considers the question of when it is appropriate for health professionals to disclose clinically significant genetic information without patient consent. Existing ethical principles offer little guidance in relation to this issue. We build on suggestions that genetic information may be viewed as collective or shared information, and we introduce the concept of ‘familial comity’ as a fresh way to consider the issues.Competing Interests: None declared. Funding: No special funding was secured for this research.     

Rethinking techno-moral disruption in bioethics,society, and justice

In response to De Proost and Segers, we provide further reflections on how technologies induce moral change. We discuss moral changes at the societal level as distinguished from changes in bioethical principles or ethical concepts, impacts on theories of justice, and whether the transformations are negative or positive.     

Review of genes in development: re-reading the molecular paradigm

Genes in Development is a collection of 13 stimulating essays on "post genomic" approaches to the concept of the gene. At the risk of caricaturing some complex balances, the contributors tend to be skeptical about genetic determinism, the central dogma of molecular biology, reductionism, genes as programs and the concept of the gene as a DNA sequence. They tend to like emergent properties, complexity theory, the parity thesis for developmental resources, developmental systems theory, and membranes. But within this broad weltanschauung the essays in Genes in Development vary widely in their interests and emphases––from the history of twentieth century genetics to the social and ethical issues raised by contemporary genetics––which makes for an attractive and valuable collection.     

Rationale for an integrated approach to genetic epidemiology

Conclusion: Genetic knowledge is now in the public domain and its interpretation by the media and the citizens brings the issues into the public forum of discussion for the necessary ethical, legal and socio-cultural evaluation of its application. Science is being perceived by some as dangerous and as requiring international regulation. Others feel that genetic knowledge will be the breakthrough that will permit medical progress and individual autonomy with regards to personal health and lifestyle choices. The mapping of the human genome has already yielded valuable information on an increasing number of diseases and their variants. Prevailing popular and journalistic archetypes ("imaginaires") used in the media are perceived by the producers as slowing down the possible application of genetic knowledge. The answers to these dilemmas are not readily apparent nor are they prescribed by classical philosophy of medicine. Since genetic knowledge eventually resides with the individual who carries the genes of disease and/or susceptibility, a logical approach to integration of this knowledge at a societal level would seem to reside with individual education and decision-making. The politics of the ensuing social debate could transform the current social contract since an individual's interests need to be balanced against those of his or her immediate family in the sharing of information. The ethical foundations of such a contract requires the genetic education of "Everyone" as a matter of urgent priority. Genetic education should not serve ideological power struggles between the medical establishment and the ethical-legal alliance. Instead, it should ensure the transfer of knowledge to physicians, to patients, to users, to planners, to social science and humanities researchers and to politicians, so that they may make "informed" and free decisions....     

Human genome research and the public interest: progress notes from an American science policy experiment.

This essay reviews the efforts of the U.S. Human Genome Project to anticipate and address the ethical, legal, and social implications of new advances in human genetics. Since 1990, approximately $10 million has been awarded by the National Institutes of Health and the Department of Energy, in support of 65 research, education, and public discussion projects. These projects address four major areas of need: (1) the need for both client-centered assessments of new genetic services and for improved knowledge of the psychosocial and ethnocultural factors that shape clients' clinical genetic experiences; (2) the need for clear professional policies regarding human-subject research, clinical practice standards, and public health goals in human genetics; (3) the need for social policy protection against unfair access to and use of personal genetic information; and (4) the need for improved public and professional understanding and discussion of these issues. The Human Genome Project's goal is to have defined, by 1995, policy options and programs capable of addressing these needs.     

Towards the development of better crops by genetic transformation using engineered plant chromosomes

Plant Biotechnology involves manipulation of genetic material to develop better crops. Keeping in view the challenges being faced by humanity in terms of shortage of food and other resources, we need to continuously upgrade the genomic technologies and fine tune the existing methods. For efficient genetic transformation, Agrobacterium-mediated as well as direct delivery methods have been used successfully. However, these methods suffer from many disadvantages especially in terms of transfer of large genes, gene complexes and gene silencing. To overcome these problems, recently, some efforts have been made to develop genetic transformation systems based on engineered plant chromosomes called minichromosomes or plant artificial chromosomes. Two approaches namely, “top-down” or “bottom-up” have been used for minichromosomes. The former involves engineering of the existing chromosomes within a cell and the latter de novo assembling of chromosomes from the basic constituents. While some success has been achieved using these chromosomes as vectors for genetic transformation in maize, however, more studies are needed to extend this technology to crop plants. The present review attempts to trace the genesis of minichromosomes and discusses their potential of development into plant artificial chromosome vectors. The use of these vectors in genetic transformation will greatly ameliorate the food problem and help to achieve the UN Millennium development goals.     

Attitudes to biotechnology: estimating the opinions of a better-informed public

Public familiarity with basic scientific concepts and principles has been proposed as essential for effective democratic decision-making (Miller, 1998). Empirical research, however, finds that public 'scientific literacy' is generally low, falling well short of what normative criteria would consider 'acceptable.' This has prompted calls to better engage, educate and inform the public on scientific matters, with the additional, usually implicit assumption that a knowledgeable citizenry should express more supportive and favourable attitudes toward science. Research investigating the notion that 'to know science is to love it' has provided only weak empirical support and has itself been criticised for representing science and technology as a unified and homogenous entity. In practice, it is argued, how knowledge impacts on the favourability of attitudes will depend on a multiplicity of actors, not the least of which is the particular area of science in question and the technologies to which it gives rise (Evans & Durant, 1992). This article uses a new method for examining the knowledge-attitude nexus on a prominent area of 21st century science--biotechnology. The idea that greater scientific knowledge can engender change in the favourability of attitudes toward specific areas of science is investigated using data from the 2000 British Social Attitudes Survey and the 1999 Wellcome Consultative Panel on Gene Therapy. Together the surveys measure public opinion on particular applications of genetic technologies, including gene therapy and the use of genetic data, as well as more general attitudes towards genetic research. We focus our analysis on how two different measures of knowledge impact on these attitudes; one a more general measure of scientific knowledge, the other relating specifically to knowledge of modern genetic science. We investigate what impact these knowledge domains have on attitudes toward biotechnology using a regression-based modelling technique (Bartels, 1996; Althaus, 1998; Sturgis, 2003). Controlling for a range of socio-demographic characteristics, we provide estimates of what collective and individual opinion would look like if everyone were as knowledgeable as the currently best-informed members of the general public on the knowledge domains in question. Our findings demonstrate that scientific knowledge does appear to have an important role in determining individual and group attitudes to genetic science. However, we find no support for a simple 'deficit model' of public understanding, as the nature of the relationship itself depends on the application of biotechnology in question and the social location of the individual.     

Positive selectable marker genes for routine plant transformation

Summary Plant genetic transformation technologies rely upon the selection and recovery of transformed cells. Selectable marker genes used so far have been either antibiotic resistance genes or herbicide tolerance genes. There is a need to apply alternative principles of selection, as more transgenic traits have to be incorporated into a transgenic crop and because of concern that the use of conventional marker genes may pose a threat to humans and the environment. New classes of marker genes are now available, conferring metabolic advantage of the transgenic cells over the non-transformed cells. The new selection systems, as described in this review, are being used with success and superior performance over the traditional marker systems.     

Science,medicine, and the future. Prospecting for gold in the human genome.

Doctors struggling with the daily problems of clinical medicine usually have little time for molecular and cell biology. But genetic research is producing an explosion of knowledge which doctors will need to understand in order to join in the ethical and financial debates that will inevitably follow the new treatments discovered. There may, indeed, be therapeutic gold hidden in our genes, but the price for it could be more than we can afford. This is the first of three articles introducing a series which aims to convey the excitement and potential power of biomedical science by speculating how current research will impinge on clinical management of common conditions.     

Recent Developments in Human Behavioral Genetics: Past Accomplishments and Future Directions

The field of behavioral genetics has enormous potential to uncover both genetic and environmental influences on normal and deviant behavior. Behavioral-genetic methods are based on a solid foundation of theories and methods that successfully have delineated components of complex traits in plants and animals. New resources are now available to dissect the genetic component of these complex traits. As specific genes are identified, we can begin to explore how these interact with environmental factors in development. How we interpret such findings, how we ask new questions, how we celebrate the knowledge, and how we use or misuse this knowledge are all important considerations. These issues are pervasive in all areas of human research, and they are especially salient in human behavioral genetics.     

What 'most people' do: Exploring the ethical implications of genetic counselling

Genetic counselling, and the ethical principles of non-directiveness and client autonomy that counsellors aspire to, are a cornerstone in the defence of genetic practice against accusations of eugenics. This paper examines the practical application of these principles using a conversation analytic approach, arguing that there is a need to pay greater attention to local interactional contexts in analysing counsellors' attainment or otherwise of ethical ideals.     

Population biobanks and returning individual research results: mission impossible or new directions?

Historically, large-scale longitudinal genomic research studies have not returned individual research results to their participants, as these studies are not intended to find clinically significant information for individuals, but to produce ‘generalisable’ knowledge for future research. However, this stance is now changing. Commentators now argue that there is an ethical imperative to return clinically significant results and individuals are now expressing a desire to have them. This shift reflects societal changes, such as the rise of social networking and an increased desire to participate in medical decision-making, as well as a greater awareness of genetic information and the increasing ability of clinicians to use this information in health care treatment. This paper will discuss the changes that have prompted genomic research studies to reconsider their position and presents examples of projects that are actively engaged in returning individual research results.     

How Distinctive is Genetic Information?

There is extensive discussion of the ethical, social, economic and political issues associated with the use of technologies based on DNA techniques. Many of these debates are premised on the assumption that DNA, and the genetic information that may be derived from it, have unique features which raise new social and ethical issues. In this paper it is argued that several of the features associated with DNA which are sometimes regarded as unique are shared with other biological materials. Others owe more to the cultural image of DNA and some of the metaphors used to discuss it in biology and in wider debates than to the biological properties of DNA. The paper discusses the concepts of genetic material and genetic information and the social construction of DNA in relation to forensic DNA databases, paternity testing and genetic testing for disease. The paper concludes by suggesting that there are seven areas where issues related to DNA and genetic information are at least relatively distinct.     

Utilitarianism and the pandemic

There are no egalitarians in a pandemic. The scale of the challenge for health systems and public policy means that there is an ineluctable need to prioritize the needs of the many. It is impossible to treat all citizens equally, and a failure to carefully consider the consequences of actions could lead to massive preventable loss of life. In a pandemic there is a strong ethical need to consider how to do most good overall. Utilitarianism is an influential moral theory that states that the right action is the action that is expected to produce the greatest good. It offers clear operationalizable principles. In this paper we provide a summary of how utilitarianism could inform two challenging questions that have been important in the early phase of the pandemic: (a) Triage: which patients should receive access to a ventilator if there is overwhelming demand outstripping supply? (b) Lockdown: how should countries decide when to implement stringent social restrictions, balancing preventing deaths from COVID-19 with causing deaths and reductions in well-being from other causes? Our aim is not to argue that utilitarianism is the only relevant ethical theory, or in favour of a purely utilitarian approach. However, clearly considering which options will do the most good overall will help societies identify and consider the necessary cost of other values. Societies may choose either to embrace or not to embrace the utilitarian course, but with a clear understanding of the values involved and the price they are willing to pay.