Ethical issues raised by genetic testing with oligonucleotide microarrays

Because genes and alterations within them determine the identity, characteristics, and inheritance of every individual, the application of genetic science to humans has long been surrounded by apprehension, controversy, and real or perceived potential for abuse. Crude eugenics practices of the past now find a theoretical rebirth and transformation through the use of modern molecular genetic technologies for mutation detection, predictive and prenatal diagnosis, and, ultimately, gene replacement. The advent of oligonucleotide microarray analysis, in which hundreds or thousands of genes and mutations can be tested in parallel, offers tremendous promise for more accurate, sensitive, and efficient genetic testing. At the same time, however, this powerful technology dramatically increases the number and scope of ethical concerns accompanying each individual test request. This article considers the evolution and implications of these concerns, from the initial ordering of a microarray test by the physician to such issues as informed consent, privacy, confidentiality, clinical utility, discrimination, stigmatization, ethnic and population impact, and reimbursement.     

Ethical boundaries in genetic testing.

The scarcity of resources that can be allocated to genetic testing will ultimately limit the number of diseases subjected to molecular analysis. Medical student David Allan, who claimed first prize in CMAJ''s 1995 Logie Medical Ethics Essay Contest, looks at the ethical principles that should guide decisions about genetic testing, and the importance of communicating these principles to patients and their families.     

Ethical aspects of genetic testing.

No research study or significant medical treatment can be done involving patients without their informed consent. In workplaces and environmental settings, individuals are often exposed to mutagenic or carcinogenic substances, usually without their knowledge, and not with their informed consent. Such exposures can lead to evermore easily documentable genetic changes. As genetic testing becomes more widespread, there are significant ethical implications regarding employment, insurance coverage, and confidentiality regarding medical information. With an increased ability to detect genetic changes, or 'unfavorable' genetic polymorphisms, this information should not be used to deny employment or increase insurance rates. Rather, such information should be used to increasingly provide appropriately safe workplaces, and place workers in less hazardous settings.     

Ethical issues raised by personalized nutrition based on genetic information

Four principles are taken as basis for the ethical analysis: autonomy, nonmaleficence, beneficence, and justice. Health is understood as a limited aspect of wellbeing. Food is understood as an important aspect of wellbeing, not only an instrument for health. Modern society is characterized by a tendency to identify wellbeing with external rather than subjective circumstances, to identify wellbeing with health, and to create exaggerated health expectations. Based upon this understanding, aspects of personalized nutrition are discussed: genetic testing, counselling, and development of special dietary products. Today the predictive value of genetic tests for personal nutrition is limited, and experimental at best. Recommendations for the future: Personalized nutrition must be based on solid knowledge. Phenotypic analyses should be used when adequate. When a genetic test can have a clear advantage, this should be preferred. Opportunistic screening should only be used when clearly beneficial. Specially trained persons should collect information from genetic tests and carry through councelling on a personal basis. Marketing of genetic tests directly sold to the public should be discouraged. Development of special products for personalized nutrition may be necessary in some cases. However, this may also lead to a medicalization of diet.     

Beyond consent: ethical and social issues in genetic testing

Informed consent is a vital ethical doctrine in clinical medicine and, through genetic counselling, is being applied to genetic testing. But genetic testing raises issues that transcend the traditional concept of informed consent. Genetic tests are adopted without demonstrable clinical benefit, and the consequences of testing can reach beyond the individual to their families and communities. Understanding the social and cultural context of genetic testing will lead to more informed discussion and debate on these issues.     

Ethical issues in transgenics

The arguments of critics and concerns of the public on generating transgenic cloned animals are analyzed for the absence or presence of logical structure. Critics' arguments are symbolically compared with "genetic trespassing," "genetic speeding," or "going the wrong way," and responses are provided to these arguments. Scientists will be empowered to participate in the public discussion and to engage the critics on these issues as they consider thoughtful, plausible responses to their concerns. Temporary moratoriums are recognized as a plausible approach to dealing with possible concerns of new scientific advancements.     

Ethical issues in brain nanomedicine

Brain pathology is a perfect application field for nanotechnologies supporting the concept of nanomedicine. It implies the use of nanosized tools for diagnosis and therapy and finally the switch to nanosized disease. A good illustration is the synergistic association of functional neurosurgery to micro/nanotechnologies. The developments around electrostimulation are a good example of the lower invasivity and better therapeutical efficacy that can be achieved. Nanolevel disease detection and therapy dramatically modifies medical philosophy as well as practice. The demonstration of the validity of the concept of nanomedicine has to be done carefully and this period of validation is a precious time to solve ethical problems. Ethical issues include the problem of disease detection in “healthy patients”; the non medical use of nanotechnologies, and the acceptance of what could be a potentially uncontrollable major modification of the human body. All these items are used against nanotechnologies, thus it will be crucial to inform the public about the state of the art in nanomedicine and about the existing regulations. National and European regulations should be adequate for nanomedicine, provided there is progressive integration instead of a conservative attitude blocking experiments and progress. The European research community has a good opportunity to do that.     

Ethical issues in ethnomusicological filmmaking

This paper investigates ethical issues which the author had to face in making a series of four ethnomusicological films in central Switzerland. Specifically related as well to an experience in filming music, the subjects considered raise questions of general concern in ethnographic filmmaking. Three main matters are discussed: revealing editing devices, which is rarely done in the film itself; the risk of the musicians becoming the laughing stock of the village if they appear to have weaknesses in their performance; and the return of research to those being studied, for their own benefit.     

Ethical issues in translational research

The translation of biomedical research knowledge to effective clinical treatment is essential to the public good and is a main focus of current health policy. However, recent health policy initiatives intended to foster the translation of basic science into clinical and public health advances must also consider the unique bioethical issues raised by the increased focus on translational research. Safety of study participants and balancing of risk due to treatment with the potential benefits of the research is tantamount. This article synthesizes theory from clinical ethics, operational design, and philosophy to provide a bioethical framework for the health policy of translational research.     

Ethical issues in animal cloning

The issue of human reproductive cloning has recently received a great deal attention in public discourse. Bioethicists, policy makers, and the media have been quick to identify the key ethical issues involved in human reproductive cloning and to argue, almost unanimously, for an international ban on such attempts. Meanwhile, scientists have proceeded with extensive research agendas in the cloning of animals. Despite this research, there has been little public discussion of the ethical issues raised by animal cloning projects. Polling data show that the public is decidedly against the cloning of animals. To understand the public's reaction and fill the void of reasoned debate about the issue, we need to review the possible objections to animal cloning and assess the merits of the anti-animal cloning stance. Some objections to animal cloning (e.g., the impact of cloning on the population of unwanted animals) can be easily addressed, while others (e.g., the health of cloned animals) require more serious attention by the public and policy makers.     

Ethical issues and the family doctor

After noting several contemporary societal factors that contribute to increasing concern about bioethical issues in general, the author focuses on special problems that confront the general or family practitioner. These problems arise from the family physician's large number of potentially conflicting roles and relationships.     

Ethical issues in amniocentesis and abortion

The ethical issues surrounding amniocentesis are seen as centering on 4 focal points. First is the policy of the diagnostic treatment center. Here, 2 questions arise: Is the client involved in a high-risk pregnancy? And, if a positive diagnosis is made, will the parents consent to an abortion? Second is the role of the genetic counselor, which is seen as supportive rather than leading. He should assist the prospective parents in reaching a decision to undergo amniocentesis and possible abortion that is mutually acceptable. The prospective parents, the third focal point, may face the question of deciding what is normal. The clients must also realize the terrible strains that are put on a marriage into which a severely defective child has been born. The fourth focal point is public policy. While amniocentesis may appear to threaten some values held important in our society, the author regards the procedure as an interim solution on the road to an understanding of and ability to treat genetic defects.