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PubMedDate not supplied

Perceptions of genetic discrimination among at-risk relatives of colorectal cancer patients.

PURPOSE: To explore the concerns of at-risk relatives of colorectal cancer patients about genetic discrimination and their awareness of current legislative protections. METHODS: A questionnaire was sent to unaffected individuals with a family history of colorectal cancer who had enrolled in the Johns Hopkins Hereditary Colorectal Cancer Registry (N = 777). RESULTS: Of the 470 respondents, approximately half rated their level of concern about genetic discrimination as high. The majority of respondents, 79%, learned about genetic discrimination from at least one media source (television, newspapers, magazines, and radio). If they were to pursue genetic testing, respondents with a higher level of concern about genetic discrimination would be significantly more likely to pay out of pocket, use an alias, or ask for test results to be excluded from their medical record. Awareness and understanding of legislation regarding genetic discrimination was found to be minimal. CONCLUSION: Findings from this study demonstrate the negative effect of concerns about genetic discrimination on decisions about utilization of genetic services. Stronger legislative protections against genetic discrimination and increased public education through the scientific community and media sources are needed.

Adult↗
PubMedDate not supplied

An international survey of predictive genetic testing in children for adult onset conditions.

PURPOSE: Predictive genetic testing is offered to asymptomatic adults even when there is no effective prophylaxis or treatment. Testing of young people in similar circumstances is controversial, and guidelines recommend against it. We sought to document descriptive examples of the occurrence of genetic testing in young people for nonmedical reasons, in the countries where guidelines exist. METHODS: Clinical geneticists in the USA, Canada, UK, Australia, and New Zealand were surveyed about the occurrence and outcomes of testing in asymptomatic young people for conditions where no prophylaxis or treatment exists and onset is usually in adulthood. RESULTS: Of 301 responses, details were provided of 49 cases where such testing had occurred. The most common condition tested for was Huntington Disease. In 22 cases (45%), the young person tested was immature, defined as under the age of 14 years. Results were disclosed to only two immature minors and in three cases parents experienced clinically significant anxiety related to how they would pass on information to their gene positive child. In 27 cases (55%), the young person tested was mature. Results were disclosed to 26 mature minors and it was reported that two individuals experienced an adverse event. Consistent follow-up did not take place and findings represent the minimum frequency of adverse events. The majority of respondents agree with existing guidelines but many believe each case must be considered individually. CONCLUSION: Clinicians agree with existing guidelines regarding predictive testing in young people, but choose to provide tests for nonmedical reasons in specific cases.

Adolescent↗
PubMed1999

The right to genetic ignorance confirmed.

One of the much debated issues around the evolving human genetics is the question of the right to know versus the right not to know. The core question of this theme is whether an individual has the right to know about her own genetic constitution and further, does she also have the right to remain in ignorance. Within liberal traditions it is usually held that people, if they so wish, have the right to all the knowledge available about themselves. This right is based on the value of autonomy or on the right of self-determination, and it is sometimes partly justified as a countermeasure to the authorities' control over people. I do not wish to deny the right to genetic knowledge (about oneself). I think that its existence is self-evident. The argument I want to put forth in this paper is that in liberal societies we should acknowledge people's right to remain in ignorance as well. The only reason for not doing this would be that grave harm to others would follow if people were allowed to make these seemingly self-regarding decisions. Arguments presented against the right to ignorance are two-fold. First there are those arguing against the right to ignorance on the grounds of harm to others, that is, philosophers who do not deny people's right to ignorance in self-related matters but wish to state that genetic ignorance causes harm to others, and this is one of the most commonly accepted reasons for restricting people's freedom. The other line of argument flows from the Kantian view that not even merely self-regarding foolishness (in the eyes of others) should be allowed.

Child↗
PubMed1999

Should we undertake genetic research on intelligence?

Although the concept of intelligence is difficult to define, research has provided evidence for a significant genetic component. Attempts are now being made to use molecular genetic approaches to identify genes contributing to intelligence, and to determine the ways in which they interact with environmental variables. This research is then likely to determine the developmental pathways of intelligence, in an effort to understand mental handicap and learning disorders and develop new treatment strategies. This paper reviews research on the genetic basis of intelligence, and discusses the ethical concerns, including the role of genetic information, the value we place on intelligence and the allocation of resources. It will be argued that the objections raised are problematic, and that because of the value of this knowledge and the prospect of improving lives, this research is morally required. We will then provide a brief analysis of the issues raised by enhancement of intelligence using genetic technology, and will argue that there is no intrinsic difference between this and other means of optimising intelligence.

Eugenics↗
PubMed2001

Experiences of genetic risk: disclosure and the gendering of responsibility.

The question of 'who owns genetic information' is increasingly a focus of ethical inquiry. Applied to predictive testing, several recent critiques suggest that persons with a genetic disorder have a moral duty to disclose that information to other family members. The justification for this obligation is that genetic information belongs to and may benefit not only a single individual, but also members of a biological kinship. This paper considers this issue from a different vantage point: How does gender intersect with the moral duty to disclose genetic information? Scholars have argued that gender is partly comprised of distinct assignments and assumptions of responsibility. Thus, there is a danger that gendered patterns of socialization will make women feel that they should take primary responsibility for disclosing genetic information to others. This article explores issues of responsibility and disclosure of risk information by drawing on an empirical study of women and men who have undergone genetic testing for hereditary breast/ovarian cancer. The research study suggests that disclosure of genetic information is a gendered activity, with both the benefits and burdens of this task falling primarily on women. It also illustrates that when disclosure is understood contextually, it is a far more complicated matter than when viewed through a theoretical lens. The article considers the relevance of these findings on ethical debate and genetic counselling practices.

Breast Neoplasms↗
PubMed1997

China's genetic services providers' attitudes towards several ethical issues: a cross-cultural survey.

Attitudes towards ethical, legal and social issues in genetic research and practice were investigated in 402 genetic services providers from 30 provinces and autonomous regions in China. This was done using a Chinese version of an international survey questionnaire on ethics and genetics that has been circulated in 37 nations. In all, 255 study participants completed questionnaires (63%). The majority of the respondents (89%) reported that they agreed with the current Chinese laws and regulations on termination of pregnancy for genetic abnormalities and non-medical indications, on the basis of considerations of population control and family planning. More than half the respondents opposed sex selection by prenatal diagnosis in the absence of an X-linked disorder. However, most of them (86%) would prefer directive counseling. More than half would agree to disclose genetic information to relatives at risk, and would permit third parties such as law enforcement agencies, spouse/partner, blood relatives, employers involving public safety, life and health insurers to access stored DNA without consent. The majority (73%-98%) also thought that DNA fingerprinting should be required for prisoners convicted of or charged with crimes, members of armed forces and all newborns. Although these are only the first part of the results of our international survey, they provide an initial basis for international discussion on ethics and genetics in China.

Attitude of Health Personnel↗
PubMed2004

Genetic discrimination: the clinician perspective.

Clinicians attending continuing education sessions in California were surveyed about their beliefs and attitudes regarding genetic discrimination and their knowledge of protective legislation. Two hundred seventy-one surveys were collected from physicians (n = 191) and nurses (n = 80). Most respondents lacked information or were misinformed about the existence of protective legislation (58.3%) or published cases of insurance discrimination (85.2%); 52.4% believed that mutation carriers have difficulty obtaining health insurance; 13% would not encourage genetic testing, despite a family history of cancer. Clinician concerns about potential genetic discrimination, and lack of information regarding protective legislation, may influence access to care.

Genetic Counseling↗
PubMed2006

Predictive genetic testing in young people for adult-onset conditions: where is the empirical evidence?

Predictive genetic testing in young people for severe, adult-onset conditions is advised against in current guidelines. Despite this, there has been considerable debate regarding the issue. Some perceive such testing as too potentially harmful to allow. Others perceive it as an opportunity for the promotion of benefit, an opportunity even for the prevention of harm. The only way to resolve this theoretical debate is to collect empirical data related to the effects of such testing when it occurs. However, more than 15 years after the debate began, there is virtually no such empirical evidence available. The reasons for this lack of evidence appear to relate to the rarity of such testing, which when it occurs is not studied systematically. Additionally, clinicians performing such tests may feel vulnerable in sharing the outcomes, given that such testing is contrary to current recommendations. We propose a way forward that entails the provision of tests to mature minors, where clinicians deem this appropriate. These tests should be performed as part of an international research collaboration, facilitated by one leading group.

Adolescent↗
PubMedDate not supplied

The policy and ethical implications of genetic research on attention deficit hyperactivity disorder.

OBJECTIVE: To review the policy and ethical implications of recent research on the molecular genetics of attention deficit hyperactivity disorder (ADHD). METHOD: MEDLINE and psycINFO database searches were used to identify studies on the genetics of ADHD. The implications of replicated candidate genes are discussed. RESULTS: The findings for most genes have been inconsistent but several studies have implicated the genes in the dopaminergic pathway in the aetiology of ADHD. CONCLUSIONS: The current evidence on the genetics of ADHD is insufficient to justify genetic screening tests but it will provide important clues as to the aetiology of ADHD. Genetic information on susceptibility to ADHD has the potential to be abused and to stigmatize individuals. Researchers and clinicians need to be mindful of these issues in interpreting and disseminating the results of genetic studies of ADHD.

Attention Deficit Disorder with Hyperactivity↗
PubMedDate not supplied

Pharmacogenetics approach to therapeutics.

1. Pharmacogenetics refers to the study of genetically controlled variations in drug response. Functional variants caused by single nucleotide polymorphisms (SNPs) in genes encoding drug-metabolising enzymes, transporters, ion channels and drug receptors have been known to be associated with interindividual and interethnic variation in drug response. Genetic variations in these genes play a role in influencing the efficacy and toxicity of medications. 2. Rapid, precise and cost-effective high-throughput technological platforms are essential for performing large-scale mutational analysis of genetic markers involved in the aetiology of variable responses to drug therapy. 3. The application of a pharmacogenetics approach to therapeutics in general clinical practice is still far from being achieved today owing to various constraints, such as limited accessibility of technology, inadequate knowledge, ambiguity of the role of variants and ethical concerns. 4. Drug actions are determined by the interplay of several genes encoding different proteins involved in various biochemical pathways. With rapidly emerging SNP discovery technological platforms and widespread knowledge on the role of SNPs in disease susceptibility and variability in drug response, the pharmacogenetics approach to therapeutics is anticipated to take off in the not-too-distant future. This will present profound clinical, economic and social implications for health care.

ATP-Binding Cassette Transporters↗