Life insurers' access to genetic information: a way out of the stalemate?Introduction
The advent of genomics at the end of the 20th century intensified the existing debate surrounding the social, ethical, and legal issues raised by modern medicine. Genetics increased popular awareness of fundamentally important issues including the redefinition of the human being, eugenics eugenics (yjĕn`ĭks), study of human genetics and of methods to improve the inherited characteristics, physical and mental, of the human race. and the organization of healthcare in liberal democracies. The general population, informed through the lens of the media, had to quickly learn and understand the meaning of complex terms and concepts such as "cloning", "genetic discrimination", "stem cells stem cells, unspecialized human or animal cells that can produce mature specialized body cells and at the same time replicate themselves. Embryonic stem cells are derived from a blastocyst (the blastula typical of placental mammals; see embryo), which is very young ", "gene therapy", or "medically assisted reproduction assisted reproduction
The use of medical techniques, such as drug therapy, artificial insemination, or in vitro fertilization, to enhance fertility. ".
The societal consequences of scientific developments in the field of genomics were especially visible in the areas of privacy and personal confidentiality. In the mid-1980s, progress in the development of predictive tests for Huntington's disease Huntington's disease, hereditary, acute disturbance of the central nervous system usually beginning in middle age and characterized by involuntary muscular movements and progressive intellectual deterioration; formerly called Huntington's chorea. coincided with the first discussions in specialized fields about the risks of "genetic discrimination." (1) The emerging debate, polarized A one-way direction of a signal or the molecules within a material pointing in one direction. by the media, became more extensive during the 1990s. Insurers' uncompromising attitude, (2) and the growing concern of the population about the vast possibilities presented by genetics, drove political decision-makers in many countries to legislate To enact laws or pass resolutions by the lawmaking process, in contrast to law that is derived from principles espoused by courts in decisions. in order to address popular concerns. (3)
However, despite intensive regulatory activity in Europe and in the United States United States, officially United States of America, republic (2005 est. pop. 295,734,000), 3,539,227 sq mi (9,166,598 sq km), North America. The United States is the world's third largest country in population and the fourth largest country in area. , the socio-ethical debate on insurance and genetics has barely progressed during the last twenty years TWENTY YEARS. The lapse of twenty years raises a presumption of certain facts, and after such a time, the party against whom the presumption has been raised, will be required to prove a negative to establish his rights.
2. . After focussing on certain aspects of the genetics and insurance dilemma, this article will provide a critical analysis of the evolution of the debate in France and Canada. (4) Finally, the author will argue for the need to redefine the dialogue by broadening its scope, adopting a long term perspective and recognizing the need for transparency in order to exit the dead-end we are currently facing. In the current context, genetics could well be hiding a more fundamental debate about the place of insurance in the contemporary democratic state.
Characteristics of the Debate
The results of two recent North American North American
named after North America.
North American blastomycosis
see North American blastomycosis.
North American cattle tick
see boophilusannulatus. surveys highlight the general discomfort caused by the fact that insurers could potentially use genetic information for underwriting purposes. (5) However, the two surveys share the same difficulty with regard to defining and circumscribing the precise extent of the popular sentiment. The first shows that although the majority of individuals surveyed oppose insurance companies' access to genetic data, these same individuals still perceive genetic information as being similar to other types of medical information and cannot articulate why it should be treated differently. (6) Although the results of the second study show a certain concern in the population vis-a-vis genetic discrimination, this concern seems to have had only a marginal influence on the surveyed population's decision to undergo genetic testing Genetic Testing Definition
A genetic test examines the genetic information contained inside a person's cells, called DNA, to determine if that person has or will develop a certain disease or could pass a disease to his or her offspring. or not. (7) The discomfort reflected in these and other studies (8) could be explained by the difficulty of defining the concept of "genetic discrimination".
The concept of discrimination evokes a different reality for insurers, policy-makers, and the general population. Therefore, a single question about genetic discrimination may be perceived differently by various audiences. (9) For example, in order to assess if a given law or governmental practice is discriminatory or not, the Canadian judiciary will follow article 15(1) of the Canadian Charter of Rights and Freedom (10) and the corresponding case law. In this situation, discrimination is used to indicate a type of distinction that is both unjustified and based on prohibited (or analogous) grounds, i.e., unlawful discrimination. On the other hand, for an insurer, the selection and classification of life insurance applicants based on health factors and risk level is perceived as a kind of discrimination that is both rational and legal, i.e. actuarial ac·tu·ar·y
n. pl. ac·tu·ar·ies
A statistician who computes insurance risks and premiums.
[Latin discrimination. (11) Finally, for the general population, any type of distinction between individuals, regardless of the justification, will likely be considered discriminatory especially if it results in unfavourable treatment. (12)
Adding the term "genetic" before the word "discrimination" will then exponentially increase the complexity of the expression. First, in the interest of clarity, we ought to define what genetic discrimination means: discrimination based on genetic tests results, genetic information, genetic heritage, connection to a genetically defined population group or, more broadly, all of the above. Then, it is necessary to assess what kind of medical information should be considered as genetic. Considering that an increasingly large number of pathologies have been found to have genetic components, this could be a very challenging undertaking.
Recent publications on these subjects demonstrates the inadequacy of approaches based on a broad prohibition of genetic discrimination in insurance, (13) even though this approach is used in numerous legal texts (14) and normative documents. (15) Assuming that it would be possible to arrive at an optimal definition of what constitutes genetic information (and genetic tests), we must question the relevance of distinguishing it from other types of medical information and granting it distinct and separate protection. The advocates of genetic exceptionalism Genetic exceptionalism is a genetic policy approach taken by state legislatures to safeguard genetic information in the United States. The approach builds upon the existing protection required of general health information provided by such regulations as Health Insurance Portability and (a position that considers genetic information as different from other types of health information and warranting special treatment) have advanced various reasons in support of their position. For example, the predictive aspect and familial or populational nature of genetic information, the particularly revealing nature of DNA DNA: see nucleic acid.
or deoxyribonucleic acid
One of two types of nucleic acid (the other is RNA); a complex organic compound found in all living cells and many viruses. It is the chemical substance of genes. , and the unreliability of genetic results, etc. (16) Opponents, on the other hand, point out that the majority of elements invoked to justify genetic exceptionalism are not unique to genetic information and could also apply to other types of medical information. According to according to
1. As stated or indicated by; on the authority of: according to historians.
2. In keeping with: according to instructions.
3. them, genetic exceptionalism is due to a social perception rather than a proven scientific reality. (17) The debate about the relevance of genetic exceptionalism, like the one about genetics and insurance, remains currently unresolved.
Finally, in countries with a universal healthcare system, the population no longer perceives life insurance as a simple "commercial product" allowing individuals to procure benefits in addition to those provided to the collectivity by the State. (18) This new perception may be due to the quasi-necessity, nowadays, of having life insurance in order to obtain certain goods considered essential to modern life, such as a house or a car. In these countries, access to a basic level of life insurance seems to be considered by many as a social necessity rather than an option for the privileged few who have sufficient financial resources. (19)
The debate concerning the use of genetic information by French insurers for underwriting purposes began relatively early. Already in 1991, the National Consultative Ethics Committee ethics committee A multidisciplinary hospital body composed of a broad spectrum of personnel–eg, physicians, nurses, social workers, priests, and others, which addresses the moral and ethical issues within the hospital. See DNR, Institutional review board. [CCNE CCNE Commission on Collegiate Nursing Education (national accrediting organization for baccalaureate and graduate nursing programs)
CCNE Comité Consultatif National d'Éthique
CCNE Cisco Certified Network Engineer
CCNE Connecticut Center for a New Economy ] recommended in its Opinion n[degrees]25 that insurance companies be prohibited from accessing information contained in genetic databanks or to request this information from the insurance applicants. (20)
Three years later, the Loi n[degrees]94-653 du 29 juillet 1994 was enacted to limit insurers' freedom of action. This law stipulates that "the genetic study of a person's characteristics cannot be undertaken except for medical or scientific research purposes" and that "the consent of the individual must be obtained before the study is conducted". (21) That same year, French insurers adopted a five year moratorium, pledging not to take into account the results of genetic tests conducted on insurance applicants, even if the individuals provided this information voluntarily. (22)
The cautious attitude of the French legislature, the insurance industry, and geneticists This is a list of people who have made notable contributions to genetics. The growth and development of genetics represents the work of many people. This list of geneticists is therefore by no means complete. Contributors of great distinction to genetics are not yet on the list. was, however, not sufficient to alleviate tensions. (23) In the European context, where many countries had already legislated in this area, (24) the expectations and mistrust towards insurers were high. The following excerpt ex·cerpt
A passage or segment taken from a longer work, such as a literary or musical composition, a document, or a film.
tr.v. ex·cerpt·ed, ex·cerpt·ing, ex·cerpts
1. from CCNE's Opinion n[degrees]46 illustrates the position of both the scientific community and a significant portion of the French population at the time:
Genetic tests give information on the identity of persons and emphasise their diversity which contributes to the rich nature of humankind. To use such information for the purpose of selection or of discrimination in social or economic terms, be that in the realm of public health policies, employment, or insurance systems, would be crossing a boundary of the most extreme gravity and would question those principles of equality of rights, dignity and solidarity for all human beings upon which society as we know it is based. The CCNE insists on the necessity of observing those fundamental principles whatever aims may be pursued by genetic testing. Human Rights are at stake. (25)
France was one of the original signatories of the Convention on Human Rights and Biomedicine biomedicine /bio·med·i·cine/ (bi?o-med´i-sin) clinical medicine based on the principles of the natural sciences (biology, biochemistry, etc.).biomed´ical
1. in 1997. This seminal European Convention European Convention Europe n → Europäische(r) Konvent m, EU-Konvent m prohibits both genetic discrimination and the use of genetic information outside the medical or research contexts. (26) Prior to ratification The confirmation or adoption of an act that has already been performed.
A principal can, for example, ratify something that has been done on his or her behalf by another individual who assumed the authority to act in the capacity of an agent. , each state is expected to bring its laws in conformity with the Convention. This may necessitate a change in legislation or even the adoption of a new law. Such legislation must include legal sanctions as well as provisions for the individuals who have suffered undue harm caused by contravening entities. (27) Although France has as yet to ratify the Convention, the influence it had on the French approach to the genetics and insurance debate is undeniable.
In the late 1990s, the differences between the French government, the scientific community, and the French population on one side, and the insurance professionals on the other, seemed irreconcilable. For example, despite the renewal of the five year moratorium by French insurers in April 1999, the French Conseil d'Etat recommended to the government to "adopt a strict framework concerning the communication of [genetic test] results to third parties", (28) specifying that "the sensitivity of genetic data justifies prohibiting insurers from requesting that insurance candidates undergo genetic tests before the conclusion of a contract". (29)
The conclusion of the debate was foreseeable: With the Loi no 2002-303 du 4 mars 2002 relative aux droits des malades et a la qualite du systeme de sante, the French government formally prohibited the use of genetic information by insurers. Pursuant to this law, "[n]o one can be made the object of discrimination because of his or her genetic characteristics". (30) Moreover, insurers can no longer take into account the results of an insurance applicant's genetic exams, even if the applicant submits them voluntarily. Finally, insurers cannot ask any questions regarding genetic tests and their results, nor can they request that an individual undergo genetic testing before an insurance contract is concluded or during the full course of the contract. (31)
The French legislature's decision appears premature for various reasons. First, this legislative policy does not take into account the impact that such a broad prohibition on the use of genetic test results and other information on the genetic "characteristics" of insurance applicants will have on the French insurance industry. To date, no large-scale empirical study has been carried out regarding the negative consequences (e.g. adverse-selection) that could accompany this type of prohibition. The conclusions of empirical studies Empirical studies in social sciences are when the research ends are based on evidence and not just theory. This is done to comply with the scientific method that asserts the objective discovery of knowledge based on verifiable facts of evidence. and actuarial models developed in relation to this topic have a limited applicability. (32) Second, the prohibition against discrimination based on "genetic characteristics", as we demonstrated earlier, could have significant impact given the blurred definitions of the terms "discrimination", "genetic", and even "characteristics". Since a large proportion of all modern pathologies have genetic components, (33) a broad interpretation of this law could prevent insurers from using most medical information for the evaluation of risk in insurance contracts. Finally, by treating genetic information differently from other types of medical information, doesn't the French legislature risk reinforcing genetic exceptionalism and effectively increasing the social stigmatization stigmatization /stig·ma·ti·za·tion/ (stig?mah-ti-za´shun)
1. the developing of or being identified as possessing one or more stigmata.
2. the act or process of negatively labelling or characterizing another. of at-risk individuals? It is worth noting that this group will become more and more numerous with the progress of genetics. (34)
The debate over insurance and genetics in Canada took place in a significantly different context than in France. First of all, Canada has a federal system in which the Constitution grants exclusive legislative authority to the federal and provincial governments over their respective areas of responsibility. As life insurance falls under provincial jurisdiction, the federal government cannot directly legislate on this topic. Second, Canadian discussions about insurance and genetics have been influenced, and even obscured, by the prevailing situation in the United States, (35) despite differences in the issues at stake. (36) These two factors, as well as the limited interest in the debate shown by the general population and Canadian lobby groups, (37) have resulted in the near immobilization Immobilization Definition
Immobilization refers to the process of holding a joint or bone in place with a splint, cast, or brace. This is done to prevent an injured area from moving while it heals. of both levels of government on this issue.
Provincial insurance laws do not specifically protect the personal genetic information of Canadian consumers. According to the Uniform Insurance Act and the Quebec Civil Code, insurance applicants must declare all known facts that could materially influence an insurer's risk assessment. Failing to do so could lead to the nullification nullification, in U.S. history, a doctrine expounded by the advocates of extreme states' rights. It held that states have the right to declare null and void any federal law that they deem unconstitutional. of their insurance contract. (38) This sanction is applicable even if there is no link between the insured individual's false declarations and his or her cause of death. (39) Moreover, contractual freedom could be invoked by insurance companies to require genetic testing as a precondition pre·con·di·tion
A condition that must exist or be established before something can occur or be considered; a prerequisite.
tr.v. to the conclusion of an insurance contract. However, the Canadian Life and Health Insurance Association Inc. has advised its members against adopting this kind of practice. (40) Privacy protection and human rights legislation as applied in Canada does not effectively counterbalance the lack of consumer protection in Canadian insurance laws. Federal and provincial privacy laws generally allow third-party access Third party access policies require owners of natural monopoly infrastructure facilities to grant access to those facilities to parties other than their own customers, usually competitors in the provision of the relevant services, on commercial terms comparable to those that would to personal information, with the consent of the individual who is the subject of the information. (41) It has therefore become common practice for insurers to request that applicants consent, on the insurance application form, to having any representation they made concerning their health status, along with their medical history, verified by a representative of the insurer. (42) Human rights legislation and Charter provisions prohibiting discriminatory practices could theoretically offer some degree of protection to insurance applicants. (43) However, considering the absence of any specific prohibition against genetic discrimination and the absence of clear legal precedents, the actual impact of the Charter on the problem of genetics and life insurance remains to be determined. (44)
Yet, the Canadian debate on life insurance and genetics began relatively early. In 1991, in a study paper on human dignity Human dignity is an expression that can be used as a moral concept or as a legal term. Sometimes it means no more than that human beings should not be treated as objects. Beyond this, it is meant to convey an idea of absolute and inherent worth that does not need to be acquired and and genetics commissioned by the Canadian Law Reform Commission, legal scholar Bartha Knoppers Bartha Maria Knoppers (born May 26, 1951) is a Canadian lawyer and an expert on the ethical aspects of genetics, genomics and biotechnology.
Born in Hilversum, Netherlands, she received a Bachelor of Arts from McMaster University, a Diploma of Legal Studies from Cambridge suggested that "the very nature of private insurance legitimates discrimination" (45) and that while waiting for genetic education to be ensured at all levels of society, "we may need a specific legal prohibition on genetic discrimination." (46) In 1995, the Privacy Commissioner of Canada The Privacy Commissioner of Canada is a special ombudsman and an officer of parliament who reports directly to the House of Commons and the Senate.
The Privacy Commissioner has the authority to investigate complaints filed by Canadian citizens, and report on whether there suggested in a report on genetic testing and privacy, that if the insurers' decision to use biotechnology to their advantage seems logical at the individual level, it does not at the societal level, nor is it necessarily humane. (47) Finally, during the last ten years, reports from different Canadian advisory bodies have recommended that insurers adopt a moratorium or that governments legislate with regard to the use of genetic tests for life insurance underwriting purposes. (48) For example, Ontario's Provincial Advisory Committee on New Predictive Genetic Technologies recommended that:
The government should consider implementing a moratorium that would prevent insurance companies ... from using genetic information to determine eligibility for insurance ... A moratorium would provide time for the government to consult and work with interested stakeholders to develop policies and practices for ... the insurance industry using genetic information. The moratorium should remain in effect until proper policies and processes for the use of genetic information in these contexts are implemented. (49)
These warnings unfortunately did not influence the practice of Canadian insurers. In 2000, the Canadian Life and Health Insurance Association Inc., which represents the major part of the industry, adopted a reference text for its members, stating that, in the event that a genetic test had already been performed and the insurance applicant or his/her doctor had had access to the results, it was natural that the insurer seek to obtain the information just as he would other elements of the applicant's health history. (50) The Canadian Institute of Actuaries The Canadian Institute of Actuaries is the national organization of the actuarial profession in Canada. It was incorporated on March 18, 1965. The FCIA designation stands for Fellow of the Canadian Institute of Actuaries. and the Canadian Life Insurance Medical Officers Association adopted similar policies in 2000 (51) and in 2002. (52)
During 2003, aware of the deadlock See deadly embrace.
(parallel, programming) deadlock - A situation where two or more processes are unable to proceed because each is waiting for one of the others to do something. over the question of access to genetic information by insurers, representatives from patient groups, researchers (in ethics, law, and medicine), physicians, and insurers met in order to create a working group on genetics and life insurance in order to move the debate forward. (53) After two meetings, the working group produced a reflection paper which recognized the "need to discuss" two potential solutions to the debate. The solutions identified were the following: 1) the adoption of a moratorium on the use of genetic tests by insurers, and 2) the evaluation of the validity of genetic tests and the management of customer complaints by an independent consulting committee. (54) Unfortunately, the absence of a strong joint position and the lack of governmental interest in this endeavor limited the success of this initiative and bodes ill for the Canadian debate. Canadian researchers and clinicians now worry that the Canadian population will have to face the negative effects of insurers' intransigence in·tran·si·gent also in·tran·si·geant
Refusing to moderate a position, especially an extreme position; uncompromising.
[French intransigeant, from Spanish intransigente : and the government's indifference. (55)
On multiple occasions, UNESCO UNESCO: see United Nations Educational, Scientific, and Cultural Organization.
in full United Nations Educational, Scientific and Cultural Organization has reiterated the importance of the protection from discrimination based on genetic data (56) or genetic characteristics. (57) Governments and insurers from over 40 countries in three different continents (North America North America, third largest continent (1990 est. pop. 365,000,000), c.9,400,000 sq mi (24,346,000 sq km), the northern of the two continents of the Western Hemisphere. , Europe, and Asia) have now decided to adopt either moratoria (as in the United Kingdom, Germany, Ireland, etc.) or laws (as in France, Belgium, Israel, South Korea, etc.) to restrict the use of genetic information and tests by insurers. (58) The magnitude of the controversy does not, however, seem to have diminished as a result of these measures. (59)
Despite their completely different reactions and approaches to insurers' use of genetic information, France and Canada have each arrived at a deadlock. France, by prematurely legislating leg·is·late
v. leg·is·lat·ed, leg·is·lat·ing, leg·is·lates
To create or pass laws.
To create or bring about by or as if by legislation. and by neglecting the arguments of one of the parties to the debate (the insurers), has encouraged genetic exceptionalism and therefore, ironically, heightened the need to distinguish genetic information from other types of medical information (which constitutes a form of discrimination in itself). Canada, because of the inaction in·ac·tion
Lack or absence of action.
lack of action; inertia
Noun 1. of the principal stakeholders Stakeholders
All parties that have an interest, financial or otherwise, in a firm-stockholders, creditors, bondholders, employees, customers, management, the community, and the government. (namely, government and insurers) is now one of the only developed countries that does not offer its citizens any specific protection against the risks of genetic discrimination. In these two countries, a profound questioning as well as a frank and open dialogue between all involved parties have become necessary.
In countries with a universal healthcare system, life insurance remains a private contract. Insurance companies have an understandable desire to remain profitable and competitive by offering the lowest possible rates to their customers. For insurers, it seems entirely natural to use the best possible tools in their evaluation of applicants' risk levels. It seems difficult and somewhat illogical to defend a policy prohibiting insurers from using genetic information while permitting them to use other types of medical information, such as family history (which, incidentally, contains much genetic information). In fact, it seems unwarranted to impose on insurers and ultimately, on society, the financial cost of a growing number of diseases with genetic components. The governments of the states concerned must also involve themselves financially in this debate and share with the population some of the economic burden of what has become perceived as a social necessity (e.g. by offering a publicly funded minimum life insurance protection to its citizens or by subsidizing the life insurance industry for ignoring relevant actuarial information).
Isn't the omnipresence Omnipresence
See also Ubiquity.
supreme being and pervasive spirit of the universe. [Islam: Leach, 36]
all-seeing leader watches every move. [Br. Lit.: 1984]
God sees all things in all places. of genetic exceptionalism in many developed countries really a manifestation of a more profound discomfort about access to healthcare and about the protection and management of sick or at-risk individuals? A constructive debate about genetics and insurance, rather than being undertaken from a "genocentric" perspective, should take place within a wide-ranging social debate about the place of the welfare state in the 21st century. While waiting for the beginning of such a broad debate, given the limited number of genetic tests that are considered scientifically valid, reliable and relevant for insurers, the adoption of moratoria on the use of predictive genetic tests in life insurance seems to be a prudent solution that would be relatively un-constraining for insurers.
I would like to thank Mireille Lacroix and Guillaume Sillon for editorial assistance along with many useful comments on the manuscript. I am also grateful to Alexandra Saginur for her contribution to the English translation of the manuscript. I wish to acknowledge the financial contribution of the Canadian Institutes of Health Research Canadian Institutes of Health Research (CIHR) is the major federal agency responsible for funding health research in Canada. It is the successor to the Medical Research Council of Canada. (CIHR CIHR Canadian Institutes of Health Research
CIHR Cambodian Institute of Human Rights ) for the INHERIT BRCAs project.
Yann Joly is an Associate Researcher with the Genetics and Society Project, Centre de recherche re·cher·ché
1. Uncommon; rare.
2. Exquisite; choice.
3. Overrefined; forced.
4. Pretentious; overblown. en Droit [French, Justice, right, law.] A term denoting the abstract concept of law or a right.
Droit is as variable a phrase as the English right or the Latin jus. It signifies the entire body of law or a right in terms of a duty or obligation. Public, Universite de Montreal; Correspondence should be addressed to: Centre de recherche en droit public, Universitede Montreal, C.P. 6128, succ. Centre-ville, Montreal, Quebec, H3C 3J7. Telephone: 514.343.6111 (5020). Fax: 514.343.6233. E-mail:
1. Gina Kolata Gina Kolata (born in Baltimore, Maryland, February 25, 1948) is a science journalist for The New York Times. Her sister was the environmental activist Judi Bari. , "Genetic Screening Raises Questions for Employers and Insurers" (1986) 232:4748 Science 317.
2. Ine Van Hoyweghen, Klasien Horstman & Rita Schepers, "'Genetics is not the issue': Insurers on Genetics and Insurance" (2005) 24:1 New Genetics and Society 79 at 82.
3. Trudo Lemmens, Yann Joly & Bartha M. Knoppers, "Genetics and Life Insurance: A Comparative Analysis" (2004) 2:2 GenEdit 1, online: HumGen International <http://www.humgen.umontreal.ca/int/GE_Arch_v.cfm?an=2004&no=2&lang=1>.
4. These two countries were selected because they illustrate two radically different social, ethical and legal perspectives on access to genetic information by life insurers.
5. Canada, Public Opinion Research Into Genetic Privacy Issues (Ottawa: Pollara Research and Earnscliffe Research and Communications, 2003) at 11 [Canada], online: Biostrategy <http://www.biostrategy.gc.ca/english/View.asp?pmiid=524&x=545>; Mark A. Hall et al., "Concerns in a Primary Care Population About Genetic Discrimination by Insurers" (2005) 7:5 Genetic Medicine 311 at 311 [Mark A. Hall et al.].
6. Canada, ibid. at 9.
7. Mark A. Hall et al., supra A relational DBMS from Cincom Systems, Inc., Cincinnati, OH (www.cincom.com) that runs on IBM mainframes and VAXs. It includes a query language and a program that automates the database design process. note 5 at 313.
8. Dorothy C. Wertz, "'Genetic Discrimination': Result of a Survey of Genetics Professionals, Primary Care Physicians, Patients and Public" (1998/99) 7 Health L. Rev. 7; Mark A. Hall & Stephen S Stephen, 1097?–1154, king of England (1135–54). The son of Stephen, count of Blois and Chartres, and Adela, daughter of William I of England, he was brought up by his uncle, Henry I of England, who presented him with estates in England and France and . Rich, "Patients' Fear of Genetic Discrimination by Health Insurers: The Impact of Legal Protections" (2000) 2:4 Genetic Medicine 214.
9. Mark A. Rothstein & Mary R. Anderlik, "What is Genetic Discrimination, and When and How can it be Prevented?" (2001) 3:5 Genetic Medicine 354 at 354.
10. Canadian Charter of Rights and Freedoms The Canadian Charter of Rights and Freedoms (also known as The Charter of Rights and Freedoms or simply The Charter) is a bill of rights entrenched in the Constitution of Canada. It forms the first part of the Constitution Act, 1982. , Part I of the Constitution Act, 1982, being Schedule B to the Canada Act Canada Act, also called the Constitutional Act of 1982, which made Canada a fully sovereign state. The British Parliament approved it on Mar. 25, 1982, and Queen Elizabeth II proclaimed it on Apr. 17, 1982. 1982 (U.K.), 1982, c. 11 ("15. (1) [Equality before and under law and equal protection and benefit of law] Every individual is equal before and under the law and has the right to the equal protection and equal benefit of the law without discrimination and, in particular, without discrimination based on race, national or ethnic origin, colour, religion, sex, age or mental or physical disability.").
11. Supra note 9 at 354.
12. Margaret F. Otlowski, Sandra D. Taylor & Kristine K. Barlow-Stewart, "Genetic Discrimination: Too Few Data" (2003) 11 European Journal European Journal is a weekly Deutsche Welle (DW) news program produced in English. It is broadcast from Brussels, Belgium and primarily covers political and economic developments across the European Union and the rest of Europe, as well as issues of particular concern to of Human Genetics Human genetics
A discipline concerned with genetically determined resemblances and differences among human beings. Technological advances in the visualization of human chromosomes have shown that abnormalities of chromosome number or structure are surprisingly 1.
13. Amy Otchet "Forsaking Genetic Secrets" The Unesco Courier The UNESCO Courier is a monthly online magazine published by the United Nations Educational, Scientific and Cultural Organization, UNESCO. The magazine is written journalistically and each issue looks into a single subject from different angles. (March 2001) 29, online: UNESDOC <http://unesdoc.unesco.org/images/0012/001221/122144e.pdf#122158>.
14. See for example Estonia, Human Genes Research Act, 2000, online: Estonian Legal Language Centre <http://www.legaltext.ee/text/en/X50010.htm>; France, Loi n[degrees] 2002-303 du 4 mars 2002 relative aux droits des malades et a la qualite du systeme de sante, J.O n[degrees] 54, 5 mars 2002, 4118.
15. United Nations Educational, Scientific and Cultural Organization (UNESCO), International Bioethics bioethics, in philosophy, a branch of ethics concerned with issues surrounding health care and the biological sciences. These issues include the morality of abortion, euthanasia, in vitro fertilization, and organ transplants (see transplantation, medical). Committee (IBC IBC International Building Code
IBC Iraq Body Count
IBC Institutional Biosafety Committee
IBC Inflammatory Breast Cancer
IBC International Business Company
IBC Independence Blue Cross
IBC Insurance Bureau of Canada
16. See among others, Thomas Murray This article refers to the Scottish curler. For other people named, Thomas Murray, see Thomas Murray (disambiguation).
Tom Murray was a Scottish curler. He was part of the Royal Caledonian Curling Club team which won the first Olympic gold medal in curling at the inaugural , "Genetic Exceptionalism and 'Future Diaries': Is Genetic Information Different from Other Medical Information?" in Mark A. Rothstein, ed., Genetic secrets: protecting privacy and confidentiality in the genetic era (New Haven New Haven, city (1990 pop. 130,474), New Haven co., S Conn., a port of entry where the Quinnipiac and other small rivers enter Long Island Sound; inc. 1784. Firearms and ammunition, clocks and watches, tools, rubber and paper products, and textiles are among the many and London: Yale University Yale University, at New Haven, Conn.; coeducational. Chartered as a collegiate school for men in 1701 largely as a result of the efforts of James Pierpont, it opened at Killingworth (now Clinton) in 1702, moved (1707) to Saybrook (now Old Saybrook), and in 1716 was Press, 1997) at 60; Patricia Kosseim, Martin Letendre & Bartha M. Knoppers, "Protecting Genetic Information: A Comparison of Normative Approaches" (2004) 2:1 GenEdit 1 [Patricia Kosseim], online: HumGen International <http://www.humgen.umontreal.ca/int/GE_Arch_v.cfm>.
17. Patricia Kosseim, ibid.; Mark A. Rothstein, "Genetic exceptionalism and legislative pragmatism pragmatism (prăg`mətĭzəm), method of philosophy in which the truth of a proposition is measured by its correspondence with experimental results and by its practical outcome. " (2005) 35 The Hastings Center The Hastings Center, founded in 1969, is an independent, nonpartisan, non-profit bioethics research institute dedicated to examination of essential questions in health care, biotechnology, and the environment. Report 27.
18. Nuffield Council on Bioethics, Genetics and Human Behaviour: The Ethical Context (October, 2002) at 185, online: Nuffield Council on Bioethics <http://www.nuffieldbioethics.org/fileLibrary/pdf/nuffieldgeneticsrep.pdf>; Bartha M. Knoppers, Beatrice Godard & Yann Joly, "A Comparative International Overview" in Mark A. Rothstein, ed., Genetics and Life Insurance: Medical Underwriting medical underwriting Managed care The process of determining the medical needs of an individual or group before providing coverage. See Health insurance. and Social Policy (Cambridge and London: MIT MIT - Massachusetts Institute of Technology Press, 2004) 173 [Bartha M. Knoppers].
19. Tony McGleenan & Urban Wiesing, "Insurance and Genetics: European Policy Options" (2000) 7 Euro. J. Health L. 367 at 369, 374.
20. National Consultative Ethics Committee, Opinion N[degrees]25 regarding the application of genetic testing to individual studies, family studies and population studies (1991) at 4, online: Comite Consultatif National d'Ethique <http://www.ccne-ethique.fr/english/avis/a_025.htm#deb>.
21. France, Loi n[degrees] 94-653 du 29 juillet 1994 relative au respect du corps humain, J.O n[degrees]175, 30 juillet 1994, 11056 [translated by author].
22. Federation Francaise des Societes d'Assurances, Etude e·tude
1. A piece composed for the development of a specific point of technique.
2. A composition featuring a point of technique but performed because of its artistic merit. genetique des caracteristiques d'une personne. L'engagement des assureurs de la FFSA FFSA Fédération Française des Sociétés d'Assurance
FFSA Fédération Francaise de Sport Automobile (French)
FFSA Federation Francaise Du Sport Automobile (1994).
23. See for example Martine Bulard, "Vers une selection genetique des assures" (juin 1999) L'usine nouvelle Biotech bi·o·tech
short for biotechnology
Noun 1. 26; Marie-Louise Briard Briard (brēärd`), breed of muscular, wiry working dog whose origins may be traced back to 12th-century France. It stands from 22 to 27 in. (55.9–68.6 cm) high at the shoulder and weighs between 70 and 80 lb (31.8–36.3 kg). , "Encadrement de la genetique en France" (2001) 34 Actualite et dossier en sante publique 38, online: Haut Comite de la sante publique <http://hcsp.ensp.fr/hcspi/docspdf/adsp/adsp-34/ad343844.pdf>.
24. Supra note 3; see also Council of Europe Council of Europe, international organization founded in 1949 to promote greater unity within Europe and to safeguard its political and cultural heritage by promoting human rights and democracy. The council is headquartered in Strasbourg, France. , Convention for the Protection of Human Rights and Dignity of the Human Being with regard to the Application of Biology and Medicine: Convention on Human Rights and Biomedicine, 1997 [Council of Europe], online: Council of Europe <http://conventions.coe.int/Treaty/EN/Treaties/Html/164.htm>.
25. National Consultative Ethics Committee, Opinion N[degrees]46--Opinion and recommendations on "Genetics and medicine: from prediction to prevention" (1995) at 7, online: Comite Consultatif National d'Ethique <http://www.ccne-ethique.fr/english/avis/a_046.htm#deb (filename extension, Debian) deb - The filename extension for a Debian binary package. _>.
26. Council of Europe, supra note 24 at 4.
27. Supra note 3 at 4.
28. France, Conseil d'Etat, Les lois de bioethique: 5 ans apres, Rapport du Conseil d'Etat (November 25, 1999) at 123 [translated by author].
29. Ibid. at 124 [translated by author].
30. France, Loi n[degrees] 2002-303 du 4 mars 2002, supra note 14 at 3 [translated by author].
31. Ibid. at 56.
32. As an example of empirical studies, see Cathleen D. Zick et al., "Genetic Testing for Alzheimer's Disease Alzheimer's disease (ăls`hī'mərz, ôls–), degenerative disease of nerve cells in the cerebral cortex that leads to atrophy of the brain and senile dementia. And Its Impact on Insurance Purchasing Behaviour" (2005) 24:2 Health Affairs 483; as an example of actuarial models, see Angus S. MacDonald, "Moratoria on the Use of Genetic Tests and Family History for Mortgage-Related Life Insurance" (2003) 9 British Actuarial Journal 217.
33. The International HapMap Consortium, "The International HapMap Project The International HapMap Project is an organization whose goal is to develop a haplotype map of the human genome (the HapMap), which will describe the common patterns of human genetic variation. " (2003) 426:6968 Nature 789.
34. Bartha M. Knoppers, supra note 18.
35. A vast majority of American states have legislated to prohibit genetic discrimination in the health and long term insurance sectors. However, the American legislator LEGISLATOR. One who makes laws.
2. In order to make good laws, it is necessary to understand those which are in force; the legislator ought therefore, to be thoroughly imbued with a knowledge of the laws of his country, their advantages and defects; to has thus far paid little attention to the life insurance sector and issues in this field have only been debated within the academic community. The context is also different because in the United States, health care is delivered principally by private professionals and in private institutions. Even though some health care financing programs exist at the federal, state, and local level, a large number of American citizens must still pay for health care, without support from a third party payment source. See Barry R. Furrow furrow /fur·row/ (fur´o) a groove or sulcus.
atrioventricular furrow the transverse groove marking off the atria of the heart from the ventricles. et al., International Encyclopedia of Laws, Medical Law (United States: Kluwer Law International, 2002) at 22.
36. See for example Pauline Gravel, "Assurance, la discrimination genetique existe" Le Devoir Le Devoir is a French-language newspaper published in Montreal and distributed in Quebec and the rest of Canada. It was founded by journalist, politician and nationalist Henri Bourassa in 1910. It is a respected, intellectual, newspaper of record of sorts in Quebec. (10 September 2002), online: Le Devoir <http://www.ledevoir.com/2002/09/10/8866.html>.
37. Supra note 5 at 5.
38. Insurance Act, R.S.B.C. 1996, c. 226, s. 41(1); Insurance Act, C.C.S.M. 1987, c. 140, s. 160(1); Insurance Act, R.S.N.B. 1973, c. I-12, s. 144; Insurance Act, R.S.A. 2000, c. I-3, s. 567(1); Insurance Act, R.S.N.S. 1989, c. 231, s. 185(1); Insurance Act, R.S.P.E.I. 1988, c. I-4, s. 131(1); Insurance Act, R.S.S. 1979, c. S-26, s. 145(1); Insurance Act, R.S.N.W.T. 1988, c I-4, s- 81(1); Insurance Act, R.S.Y. 1986, c. 91, s. 85(1); Life Insurance Act, R.S.N. 1990, c. L-14, s. 14(1); Insurance Act, R.S.O. 1990, c. I-18, s. 183(1); Art. 2408 C.c.Q.
39. Insurance Act, R.S.B.C. 1996, c. 226, s. 41(2); Insurance Act, C.C.S.M., c. 140, s. 160(2); Insurance Act, R.S.N.B. 1973, c. I-12, s. 144 (2), 202(2); Insurance Act, R.S.A. 2000, c. I-3, s. 567(2); Insurance Act, R.S.N.S. 1989, c. 231, s. 185(2), 82(2); Insurance Act, R.S.P.E.I. 1988, c. I-4, s. 131(2), 191(2); Insurance Act, R.S.S. 1979, c. S-26, s. 145(2), 242(2); Insurance Act, R.S.N.W.T. 1988, c I-4, s- 81(2), 185(2); Insurance Act, R.S.Y. 1986, c. 91, s. 85(2), 188(2); Life Insurance Act, R.S.N. 1990, c. L-14, s. 14(2), 20(2); Insurance Act, R.S.O. 1990, c. I-18, s. 183(2) 308(2); Art. 2410 C.c.Q.
40. Canadian Life and Health Insurance Association Inc., Reference Document: Genetic Testing: Industry Position 2000 (updated January 1, 2003) at 1, online: Canadian Life and Health Insurance Association <http://www.clhia.ca/download/genetic_testing_ind_posn.pdf>.
41. Yann Joly, "Commentary: insurance companies should abandon their defensive approach" (2005) 25 The Lawyers Weekly 14.
42. Canadian Life and Health Insurance Association Inc., A Guide to Life Insurance (2002) at 19.
43. Supra note 10.
44. On this topic see Trudo Lemmens, "Genetics and Insurance Discrimination: Comparative Legislative, Regulatory and Policy Developments and Canadian Options" (2003) Health L. J. 41 (Special Edition--Health Law in the 21st Century).
45. Law Reform Commission of Canada, Human dignity and genetic heritage by Bartha M. Knoppers (Ottawa: Law Reform Commission of Canada, 1991) at 50.
47. The Privacy Commissioner of Canada, Genetic Testing and Privacy (1995), online: Privacy Commissioner <http://www.privcom.gc.ca/information/ar/02_04_03_e.asp>.
48. See for example Ontario, Law Reform Commission, Report on genetic testing (Toronto: Ontario Law Reform Commission, 1996) at 126; Quebec, Ministry of Research, Science & Technology, Commission de l'ethique de la science et de la technologie, The Ethical Issues of Genetic Databases: Towards Democratic and Responsible Regulation--Position Statement (February, 2003) at xviii.
49. The Provincial Advisory Committee on New Predictive Genetic Technologies, Genetic Services in Ontario: Mapping the Future (2001) at 27, online: Ontario Ministry of Health and Long-Term Care long-term care (LTC),
n the provision of medical, social, and personal care services on a recurring or continuing basis to persons with chronic physical or mental disorders. <http://www.health.gov.on.ca/english/public/pub/ministry_reports/geneticsrep01/genetic_report.pdf>.
50. Supra note 40 at 1.
51. Canadian Institute of Actuaries, Statement on Genetic Testing and Insurance (2000).
52. Canadian Life Insurance Medical Officers Association, CLIMOA Guidelines on Genetic Testing (2002).
53. Bartha M. Knoppers et al., "Genetics and Life Insurance in Canada: Points to Consider" (2004) 170:9 Canadian Medical Association Journal The Canadian Medical Association Journal (CMAJ) is a general medical journal that is published biweekly by the Canadian Medical Association (CMA).
It is considered to be one of the top six general medical journals; the others being the 1421 at online 1, online: Canadian Medical Association Journal <http://www.cmaj.ca/cgi/data/170/9/1421/DC2/1>.
54. Ibid. at 3.
55. "L'assurance vie et les tests genetiques" Enjeux [Television Program, Radio-Canada] (November 23, 2004), online: <http://www.radio-canada.ca/actualite/v2/enjeux/niveau2_1286.shtml>.
56. United Nations Educational, Scientific and Cultural Organization (UNESCO), International Bioethics Committee (IBC), International Declaration on Human Genetic Data, 2003, online: UNESCO <http://portal.unesco.org/en/ev.php-URL_ID=17720&URL URL
in full Uniform Resource Locator
Address of a resource on the Internet. The resource can be any type of file stored on a server, such as a Web page, a text file, a graphics file, or an application program. _DO=DO_TOPIC&URL_SECTION=201.html>.
57. Supra note 15 at 41.
58. Supra note 3.
59. Supra note 13.