Noninstrumental Responses

Noninstrumental responses to knowing information about the likely end of one's life are far harder to understand. These are situations in which knowing information is significant, though not because it is to be put to any practical use. Where the information is information about one's own genetic makeup and so information about the likely cause and timing of one's death this may contribute, in some intangible way, to one's sense of self, of who one is, what sort of person one is, what one's...

Geneticization and BRCA1

Department of Philosophy, Dalhousie University Breast cancer is a disease that will directly affect more than 10 of all women (and a small percentage of men) in North America. All who realize they have this disease will have their lives disrupted most will undergo surgery to remove the offending cells and surrounding tissue. Many will also undergo radiation, chemotherapy, and or long term prophylactic drug regimens all will be advised to seek ongoing medical surveillance of their breasts and...

Suggestions For Anew Framework

Clearly the individualistic framework will not serve us well in dealing with the many issues involved in the use of genetic information. What is needed is a new philosophical view which contains the following elements. First, persons, whether patients or other decision-makers must be seen as complex relational networks, composed of a variety of public physical aspects material, neural, genetic, behavorial, social, cultural, political, economic and a mix of private, inner aspects sensual,...

The Romantic Authorcreatorentrepreneur Paradigm In Intellectual Property

Patent law is thus confronted with the need to translate considerations such as risk to the environment, sacredness of life, or harm and suffering caused to animals into a language which can incorporate these concerns, as well as find an acceptable conceptual, procedural and institutional framework to do so. If bioethical concerns are to be taken seriously, patent law must be revisioned and reimagined, so that guidelines may be provided in order to safeguard and regulate the permissive...

Conclusion

High speed genetic testing, in whatever form it eventually comes to our doctors' offices, promises to radically transform the practice of medicine. It can be used to great medical benefit of all persons. At the same time, however, the social conditions in which we presently live are not ripe for exploiting this technology without causing as much if not more harm to the very individuals we seek to medically benefit. Until we can resolve the underlying contradictions in health care financing and...

Mapping The Disciplines Around Bioinformatics

Did space allow, it would also be helpful to map the situation of bioinformatics among the cluster of disciplines that surround it. For present purposes, a brief indication will have to suffice. The common object of attention is the process whereby, in the cell, the construction of the biological macromolecules, of proteins, is effectuated from the nucleic acid templates, and of the interaction of these macromolecules with each other and with compounds occurring naturally or as the result of...

The Nature Of The Concern

Detailed and accurate information concerning the likelihood of illness and the longevity of particular individuals would clearly be of tremendous advantage to the insurance industry. Such information would offer an unprecedented degree of accuracy in determin ing the likely size and timings of any future payouts on the part of individual companies, which in turn would allow a far greater degree of control in what is an essentially risky business. That the insurance industry should take a keen...

The Transparent Human Being

The public is repeatedly asking whether and if so to what extent governmental or private interest groups are compiling a database on health related information in Germany and would this openly invite misuse. Health insurances in particular might be interested in databases in order to draw further distinctions between the risk groups their clients fall into. Risk differentiation based on genetic criteria could already take place due to the information supplied when completing a contract it...

Eugenics Yesterday And Today

The word eugenics may be unfamiliar to most people today, but for a period of about sixty-five years, roughly 1880 to 1945, both that term and the theories of human improvement which it denotes were in wide currency. Francis Galton, a cousin of Darwin, invented the term and launched a movement to improve the human race, or at least to halt its perceived decline, through selective breeding. His ideas spread quickly, and by the 1920s eugenics movements existed all over the world. Eugenics, a...

Format Of Citizens Juries

Citizens' Juries may take a number of different forms, but according to the IPPR they have in common some of the following characteristics Time Several days to consider the question Information As much evidence as possible in the time available Scrutiny Opportunity to cross examine witnesses and call for more evidence Deliberation Opportunity for discussion amongst themselves and with witnesses Independence The Jury is independent of the organising body Authority Findings carry a weight of...

The Problematic Individualistic Ethicallegal Framework For Genetic Decisionmaking

Parallel to the problematic, individualistic, genetic deterministic framework of the Human Genome Project is an equally troublesome, operative, individualistic ethical legal framework for genetic decision-making. This paradigm operates most strongly in the United States, but is also present in Western Bioethics and Law in general. We need to identify the key assumptions of this paradigm. The first is that each person has the right to be an autonomous, rational, self-interested individual, a...

Delays in Disseminating Information

One view holds that researchers awaiting a patent they have applied for are likely to withhold information until the patent is granted, therefore delaying dissemination of important information (Looney, 1994, p. 244). An opposing view contends that patents provide protection and thus permit disclosure of scientific knowledge before an actual product is ready for the market. The consequence of not being allowed to patent would lead to the more detrimental consequence of maintaining secrecy in...

The Public Policy Debate Regarding Insurance and Genetic Testing

Despite the limited evidence that consumers engage in adverse selection, both insurance companies and privacy advocates are taking strong positions on the use of genetic test information in insurance underwriting. Insurance companies view adverse selection induced by keeping genetic test information private as unfair to them and to the low-risk consumers who, because of adverse selection, may pay unnecessarily high rates. In the extreme, insurance companies contend that adverse selection is a...

Piecemeal Approach

As human beings, we emerged into the world after it had been in existence for billions of years and, if we happen to disappear out of the world again, it would continue to exist as if we had never existed. To stay on the safe side, ethically and otherwise, human beings would do very well to adopt an attitude of cautious and respectful piecemeal tinkering with the world, always first seeking to know what is wrong with the state of things as they are before introducing changes aimed at modifying...

Governmental Politicspolitical Discussion And Need For Action Within Jurisdiction

Methods of genome analysis and its possibilities, dangers, further development and application substantiated governmental concerns in the mid to late '80s. In order to deal with Chances and Risks in Genetics a working group was set up which was also concerned with the implications of genetics for health insurances. Possible benefits for health insurances, legal regulations of the framework required for the application of genetic processes and questions emanating from this were also discussed in...

Dynamic And Static Reduction Theories

In normed theories, we can distinguish dynamic and static types. Dynamic normed theories allow that identity is processual and malleable, so that the contents of the Q- and P-lists can change, as can the relationship between them. The variations in the P-list are constrained by the Q-list and their changes and we expect some sort of lawlike regularities linking these regularities. Most moral normed theories are dynamic in this way I may be lonely now, but this can be changed by exercise of...

Initial Knowledge And Attitudes Toward Carrier Testing Immediately After Being Informed

In Flanders a study was executed by the Centre of Human Genetics (K.U.Leuven) in cooperation with the Medical School Health Service. In the first part, initial general knowledge about CF was measured. Then, all the 162 students were provided with an informative text. After reading the text they had to answer questions about CF and wrong answers were always corrected. Only after this information process were the attitudes towards carrier testing for CF assessed. In the second part of the study,...

The Human Genome Project and Humanness

It is suggested that the human genome project will affect our view of ourselves and our relationships with others (Kennedy & Grubb, 1994, ch. 1). Reductionism of the human being to a collection of identifiable genes, neatly labelled and stored, will result in a more mechanistic view of ourselves and others. Reproductive choices are currently engineered by social conditions, education and economics. If we are no more than a catalogue of genes it will become an increasingly large part of...

The Claims Of Justice

If we accept this view about our (lack of) responsibility for the effects of the genetic lottery, what moral and political conclusions should we draw John Rawls has famously argued that when inequalities between people are due to the natural and social lotteries, and so due to facts that people cannot be held responsible for themselves, these inequalities should be eliminated (Rawls, 1971, p. 72).3 After all, the people who are worse off cannot be said to deserve to be worse off. Nor can the...

Benefits

Genetic testing is presently labor intensive, time consuming and expensive. High speed testing, by whatever means, will bring genetic information to the physician and patient much more rapidly and at lower cost. From a purely medical point of view, we should recognize that once the necessary research has been completed, highspeed genetic testing and analysis will be an unparalleled diagnostic tool at the disposal of the physician. It will not be long before a physician will be able to get a...

Development of New Drugs

An analogous pair of opposing consequences are envisaged with respect to development of new drugs. One position argues that the next generation of modern medicines will never get out of research labs if efforts to halt the patenting of genes are successful (Feldbaum, 1996, p. 10). This view is supported with evidence taken from other areas of biomedical technology, where patents have been granted for blood clotting agents for hemophiliacs, products for breaking up blood clots, a vaccine for...

Decisionanalytic Model Of Genetic Screening

Consider genetic testing in utero (Campbell, 1992). Once the mother becomes aware she is pregnant, typically a range and sequence of tests are made available to her. Some are invasive (maternal blood serum tests, chorionic villus sampling, amniocentesis), and some are not (ultrasound scanning), and there are varying degrees of risk attached to each as well as varying degrees of expense. Assume for simplicity that expense constrains the range of tests available, but that the tests available are...

Race and Ethnicity

An analysis based on assumptions of an underlying structure of racism would emphasise the influence of racist immigration laws on the genetic variation in a community. For example, do laws restricting rights of British Moslems to marriage partners from the Indian Sub-Continent effectively narrow the gene pool of potential partners in communities practising consanguinity An anti-racist analysis would also address the interplay of racism and class in education, housing and employment in...

Knowledge And Rationality

Genetic testing serves to resolve the uncertainty over whether a person is or is not a carrier of a certain genetic abnormality. In principle, after genetic testing a person can rationally start planning the future. This is especially the case with a diagnosis which shows that the person is not a carrier of the gene in question. After a test result like this, people may feel that they have got their future and freedom back again. In the case of a test result revealing a certain genetic...

Genetic Information Is

A claim that genetic information is special compared with other health related information does not have to rely on genetic essentialism. It can also be based on a further claim that there is some other feature of genetic information which makes it different. A number of such features have been proposed in the public debate. Some have pointed out that genetic information is predictive, some that it tells us something about conditions which can be transmitted to offspring, some that it is...

The Future More Predictable Death

Will it be a good thing to inhabit a future world in which, routinely, we know our complete genetic makeup and hence as is my specific conjecture here have a far more concrete idea of the likely size and shape of our lives We will never know in advance a specific date of death, of course, but we may well know when it is likely to occur within a far narrower range. Will this be a harm, either to specific individuals, to their family members and social groupings, or to society as a whole And will...

Implications Of These Frameworks For Analysis Of Genetic Issues

The individualistic frameworks we have outlined do impact on genetic issues in some very problematic ways. First, the notions of patient and disease are automatically individualized. Thus, a patient is an individual with a disease who is receiving treatment. But genetic disease does not necessarily fit this pattern because genetic problems may be shared with family members and future offspring and the genetic information and proposed treatment(s) may have significant benefits or liabilities for...

Discussion And Conclusions

A strong test of the adverse selection hypothesis awaits the completion of the on-going collection of price and quantity information and the addition of more K2082 sample members who will be completing the four-month (and one-year) post-test interviews in the near future. Nonetheless, the preliminary analyses done in this paper suggest that adverse selection in the life insurance market is not strongly evident among women who have learned that they carry the BRCA1 gene mutation. Only in model 3...

Legal Attempts To Regulate Biotechnology And Assign Ownership

Legal documents concerning biotechnology and property rights over genetic information exemplify these difficulties. The Recitals to the Proposal for the EC Directive on the Legal Protection of Biotechnological Inventions give a clear picture of patent law as outside ethical considerations (5) and concerned with attracting biotechnological industries to remain in the EC, harmonising regulatory control within the EC and rewarding the inventor.5 The salient provisions here are as follows Whereas...

Practical Examples

What does the communitarian emphasis on our social duties mean in practice. In their normative agenda in health care policies, for instance, some of the communitarian ethicists, mainly in the United States, argue, on somewhat utilitarian grounds here, that because a great number of patients needlessly suffer or die because of a lack of donated organs, societies ought to adopt a policy that hold organ donation as a social duty or as an 'act of obligation to community' routinely expected of each...

Egalitarian Impulse of African Culture

In traditional African culture, there is both a highly egalitarian impulse and a strong levelling tendency which some scholars have identified as the causative explanation for a practice such as witchcraft (Geschiere, 1997) which I would basically consider a metaphor4 for practices and discourses fundamentally aimed at reining in super-human power and extraordinary intelligence so that these might not be abused or used selfishly and immorally but rather altruistically and benevolently. A...

Carrier Testing Of Adolescents Pros And Cons

If one wants to introduce carrier testing or screening, the question is raised To whom and when should it to be offered There is potential for its application at different times in life, with concommitant advantages and disadvantages before birth (embryonic testing) at birth (neonatal testing), in school (adolescent testing), at adult pre-pregnancy, premarital or family planning clinics (preconceptional testing), at pregnancy clinics (prenatal testing of the parents)(Dierickx, 1997a). An...

References

Anderson, C. (1993), 'Genome Project Goes Commercial. News ', Science, Vol. 259, No. 5093, 15 Jan, pp. 300-302. Annas, G.J. (1990), 'Outrageous Fortune Selling Other People's Cells', Hastings Center Report, Vol 20, No. 6 pp. 36-39. Annas, George J. (1993), 'Privacy Rules for DNA Databanks Protecting Coded 'Future Diaries, Journal of the American Medical Association, Vol. 270, No. 19, 17 November, pp. 2346 2350. Annas, George J. Glantz, Leonard H. Roche, Patricia A. (1995), ' The Genetic Privacy...

Genetic Determinism

There is now a growing body of empirical evidence on the contribution of genetic factors to phenotypic differences. The advent of recombinant DNA technology has resulted in a number of new discoveries. More and more we can interfere with or diagnose diseases, detect presymptomatically genes for monogenic disorders, uncover (early in life) genetic predisposition to common disorders (including cancer, and psychiatric disorders), anticipate normal phenotypic traits, and, in the near future, even...

The Falsity Of Genetic Essentialism

Genetic essentialism is the idea that the essence, the nature of a human being is defined by its genes (Cranor, 1994). This is often expressed in the statement that we are our genes. If genetic essentialism is true then there seems to be a fairly straightforward argument for the claim that genetic information is special. It would be information about the very essence of a person, whereas other non-genetic information would only be about accidental attributes. We would still need to be able to...

Trends In The Contemporary Bioethics Regulatory Approach

In contemporary medicine, research with human subjects gives rise to diverse bioethical dilemmas. Most of them are directly or indirectly related to the development of intellectual property rights in the human body to name a few, use of cell and tissues culture technology, together with genetic engineering, to develop human cell lines and ultimately commercial products human-derived gene therapy modern genetics associated with medically assisted procreation and the use of tissue from aborted...

Fata Scribunda

The other element of the metaphor according to which genetics is the book of destiny is that destiny is written in the DNA. In speaking of linear destiny we have hardly touched upon the essence of the issue. Speaking of its scriptural aspects we are at its core. There is no need for many examples to demonstrate that the scriptural metaphor is constitutive of genetics. Watson and Crick first interpreted and translated the genetic code. The DNA encodes the messages there is a text that should be...

Communitarian Response Duty To Know Responsibility To Share

Before the communitarian normative position can be understood, it should be acknowledged that much in the same manner as there are different formulations of liberalism or utilitarian principles, there are also many diverse communitarian views which overlap and sometimes even conflict with each other. In this context I shall focus on contemporary Western, that is mainly American, communitarianism. This Western communi-tarianism differs from other forms of more traditional communitarianisms,...

The Reports Recommendations

Bearing in mind the purpose of somatic cell gene therapy the Committee concludes that this is a proper goal for medical science Report, 1992, p. 13 . The Committee, however, suggests strict controls over such therapy by classifying it as research, subjecting it, therefore, to the more rigorous guidelines as laid down by The Royal College of Physicians of London RCP, 1990a amp b . The Committee includes foetuses among those suitable for consideration for somatic...

The Moira And Geometric Fate

The destiny was called by Stoics the Heimarmene rieipappsvr . The origin of this word is in the root meir peip that one finds also in the word Moirai. The origin of the root meir is in the verb peipo acu, to share. As we have just shown, the metaphor of a written destiny and the conception of linear causation are mutually congruent and actually the image of the thread, spun and cut by the Moirai, unavoidably brings to mind the idea of the chain of destiny. Besides, both Stoicism and the...

Treacher Collins Syndrome

It so happens that it was in the same year that Mendel's research came to light, in 1900, that E. Treacher Collins described the essential features of the syndrome which is today known by his name. Treacher Collins Syndrome has clinical manifestations that include abnormalities of the ears with hearing loss, anomalies of the facial bones and cleft palate. The 'Identification of the complete coding sequence and genomic organization of the Treacher Collins Syndrome gene' has recently been...

Entitlement And Ethics Economics And Incommensurability

The language of entitlement we choose to use in this context has enormous ethical consequences. The range of options we have where this choice is concerned, and how far ethical issues can enter the conversation here, and on what terms, are all strongly influenced by recent technological advances which render copying cheap, easy and difficult to police. According to the president of the Pharmaceutical Manufacturers Association, Gerald J. Mossinghoff, in 1986 it took a company about ten years,...

Milestones Of Modern Biotechnology

In the last few decades, pharmacology and drug research has been boosted by an authentic biological research revolution, driven largely by the advances observed in the domains of genetics, molecular and cell biology disciplines mostly dedicated to the exploration of the chemical basis of heredity and information sciences. Since the fantastic breakthrough represented by the identification, in 1944, by Avery, McLeod amp McCarty of the DNA as the genetic material, i.e., the molecule that can store...