Authors: Edwin Black
The events of September 11 only accelerated fascination with genetic identification. The technique is now widely studied as a weapon in the war against global terrorism. Think tanks have discussed a wide range of bio-metric recognition systems and smart cards to secure our society. Biometric databanks-to include DNA fingerprints-have been proposed for airports, immigration bureaus, customs stations, passport offices and even university programs for foreign students. Such systems would be deployed worldwide and could be used at airline counters and visa offices in countries across the world.
Genetic identification has also become a consumer commodity. Paternity suits, cultural and family ancestry claims, inheritance disputes and the simple fear oflosing loved ones in terrorist attacks or massive calamities have caused many to obtain their own DNA information and store it personally or in private repositories. Genetic counseling is commonly advised for many couples who may be troubled by hereditary diseases or conditions. Such genetic screens are imperative for those carrying dreaded inherited diseases, such as Huntington’s chorea, sickle-cell anemia, Tay-Sachs or a history of breast cancer. Registries are being built. Private labs now market their genetic testing.
9
The field is proliferating in a global community, employing the Internet to enable all citizens from any country to contribute to and access various labs in Australia, the United States and England.
Soon DNA fingerprints will become as common as the traditional fingerprints first discovered by Galton.
10
He suspected they might reveal much about an individual. But he probably never expected that within a century his term for the unique sworls on one’s fingertips would expand into the name for genetic identification that would reveal the secrets of a person’s biological past and future.
Eventually, genetic databases will go far beyond the identification of mere individuals. The science will create family genetic profiles for use in litigation, health and employment that may function as credit bureaus do today. The day is coming when such family information will be routinely sought in conjunction with employment, insurance and credit granting.
The Medical Information Bureau (MIB) is the American insurance industry’s massive databank that dispenses coded medical information and certain lifestyle traits on the millions of individuals who have applied for health and medical insurance. More than sixteen million individual records are stored at any given time. Records are retired after seven years. In their constant battle against fraud, the MIB enables insurance companies to double-check the veracity of applications. Like a credit bureau, the MIB collects information its insurance company members report, and dispenses it to them when they inquire. Since the 1970s, the MIB has included two codes to signify hereditary conditions, this reporter has learned. One code is for hereditary cardiovascular conditions, and the other is a general code to designate “other family hereditary medical conditions,” according to MIB officials. As of March 2003, neither hereditary code is subcoded for any specified condition such as epilepsy, congestive heart failure or clinical anxiety, officials said. Instead, the codes are designed to alert insurers to seek additional information from their applicants.
11
In a group interview with the databank’s counsel, marketing director and manager, MIB officials repeatedly insisted the two codes did not signify a genetic predisposition to a health problem, but instead merely “a family hereditary” trait. Family hereditary codes, once gathered, are reported whether or not an individual applicant has shown any symptoms. The family’s medical history itself, not the individual’s condition, is the determining factor. MIB officials also insisted they would never search out and link other family members based on hereditary conditions.
12
No DNA repository-police, medical or governmental-is currently linking family members. To do so would create modern-day, genetically-stigmatized Jukes or Kallikaks. It would be the first giant step down the road of newgenics. The financial ramifications are extraordinary and the potential for targeted exclusion is manifest. If the world sees such exclusions, it will probably see them first and most dramatically in the insurance industry.
Insurance companies vigorously claim they do not seek ancestral or genetic information. This is not true. In fact, the international insurance field considers ancestral and genetic information its newest high priority. The industry is now grappling with the notion of underwriting not only the individual applicant, but his family history as well. Insurers increasingly consider genetic traits “pre-existing conditions” that should either be excluded or factored into premiums. A healthy individual may be without symptoms, or asymptomatic, but descend from a family with a history of a disease. In the industry’s view, that individual presumably knows his family history; the insurance company doesn’t. Insurers call this disparity “asymmetrical information,” and it is hotly discussed at numerous industry symposiums and in professional papers. Governments and privacy groups worldwide want to prohibit the acquisition and use of genetic testing. Many in the insurance world, however, argue that their industry cannot survive without such information, and the resulting coverage restrictions, exclusions and denials that would protect company liquidity.
13
A June 2000 American Academy of Actuaries industry-only monograph entitled “Genetic Information and Medical Expense,” obtained by this reporter, cautiously addressed the question. In a section headed “Asymmetrical Information,” the monograph asked: “Would a ban on the use of genetic information merely prohibit insurers from asking for genetic tests, or would they also be barred from obtaining test results already known to the applicant? While a more encompassing ban may remove applicants’ fears of genetically based denial of coverage, the imbalance of information would leave insurers at a disadvantage.” The section concluded, “…biased selection would have a direct impact on premium rates, ultimately raising the cost of insurance to everyone.”
14
In the next section, entitled “Pre-existing Conditions,” the monograph argued, “Such a ban [on genetic testing] could have more severe consequences over time, as genetic technology advances.” In a series of attached potential “market scenarios,” the monograph speculated about individuals with healthy heredities subsidizing those destined to become ill. In one scenario, the monograph stated, “The ultimate character of the market depends on the relative number of these ‘genetically blessed’ individuals.”
15
A Spring 2002 American Academy of Actuaries briefing paper entitled “The Use Of Genetic Information In Disability Income And Long-Term Care Insurance,” obtained by this reporter, suggests that the insurance industry could become insolvent without the benefits of predictive testing. In a section labeled “Adverse Selection,” the briefing paper declared, “Insurers maintain that the view of the consumer advocates conflicts with the economic realities of the voluntary insurance market. Insurers are concerned that if they were prohibited from obtaining genetic information from the medical records of applicants, then those applicants would know more about their genetic predisposition than the insurance company (asymmetric information), and more substandard and uninsurable individuals would qualify for insurance. Premiums could not be adjusted adequately to cover the deterioration of the insured population because the higher prices would drive out the healthy. As the insured population disproportionately became weighted toward those who were predisposed to certain genetic defects, experience would worsen and premiums would increase. The increase in premiums would further reduce the number of healthy policy-holders and could eventually cause the insurers to become insolvent.”
16
Insurance discrimination based on genetics has already become the subject of an active debate in Great Britain. British insurers were widely employing predictive genetic testing by the late 1990s to underwrite life and medical insurance, and utilizing the results to increase premiums and deny coverage. The science of such testing is by no means authoritative or even reliable, but it allows insurers to justify higher prices and exclusions. Complaints of genetic discrimination have already become widespread. A third of those polled from genetic disorder support groups in Britain reported difficulties obtaining insurance, compared to just 5 percent from a general population survey. Similarly, a U.S. study cited by the American insurance publication
Risk Management
found that 22 percent of nearly one thousand individuals reported genetic discrimination. A
British Medical Journal
study paper asserted, “Our findings suggest that in less clear cut instances, where genes confer an increased susceptibility rather than 100% or zero probability, some people might be charged high premiums that cannot be justified on the actuarial risk they present. “
17
Nearly three-quarters of a group surveyed by Britain’s Human Genetics Commission (HGC) objected to insurer access to genetic testing. One man who tested positive for Huntington’s told of being denied insurance when his genetic profile became known; later, when he did obtain a policy, it was five times more expensive. One forty-one-year-old London woman recalled that after her genetic report showed a gene associated with breast cancer, she was unable to buy life insurance. In consequence, when she attempted to purchase a home in 1995, it was more costly. Chairman of the HGC Helena Kennedy said: “Most of us are nervous and confused about where technology might be leading, and the potential challenges to privacy and confidentiality. We know from our survey that people are worried that these developments might lead to discrimination or exploitation, and are skeptical of the law’s ability to keep up with human genetics.”
18
A Code of Practice for genetic testing by British insurers was established in 1997, but in 2001, Norwich Union Insurance, among other firms, admitted it had been using unapproved genetic tests for breast and ovarian cancers, as well as Alzheimer’s. British insurers began widely utilizing genetic tests after a leading geneticist consulting for the industry’s trade association recommended the action, a Norwich Union executive explained. The widespread concern in England is generation-to-generation discrimination pivoting not on race, color or religion, but on genetic caste. “We are concerned, of course,” warned Dr. Michael Wilks, of the British Medical Association’s Medical Ethics Committee, “that the more we go down the road of precision testing for specific patients for specific insurance policies the more likely we are to create a group who simply will not be insurable.” Wilks called such a group a genetic “underclass.” A member of Parliament characterized Norwich Union’s actions as an attempt to construct a “genetic ghetto.”
19
The British government ultimately imposed an industry-wide moratorium permitting the use of just one type of test. In the subsequent three-year period, out of 800,000 Norwich policies, only 150 involved genetic tests. But British insurance industry sources argue that unless widespread genetic testing and access is restored, the industry and the health service will be overrun with claims.
20
Moreover, some insurers may also want genetic data so they can use the information to rescind insurance, claiming that an individual fraudulently or even inadvertently omitted ancestral information from an application-even if the insurance claim is unrelated to the medical condition. Precedents abound for such retroactive invalidations, albeit based on family health history rather than genetic testing. In a 1990 Quebec case, a man was killed in a car crash. He carried the gene for a degenerative disease, a form of myotonic dystrophy, and knew his father had suffered from the malady but omitted the information from his 1987 application for a $30,000 policy. His widow was denied a policy payment when Industrial Alliance, one of Quebec’s largest insurers, prevailed in court, claiming fraud by omission. An Industrial Alliance attorney told this reporter that the company was aware the man came from a region known for a great deal of consanguinity and where myotonic dystrophy is common. Hence, the company’s postcrash investigation bore fruit.
21
The Industrial Alliance attorney added that such policy invalidations, based on applicants’ statements, are common in Canada. A company attorney explained that his firm had even invalidated one car crash death when they learned the applicant indicated he was not a smoker, and a postcrash investigation revealed the man had actually smoked within the previous year. “Even my mother was angry at me for that one,” the companyattorney admitted. “She said, ‘What does cigarettes have to do with the car crash?’” But, explained the attorney, under Quebec law, within the first two years of a life insurance policy, any material omission, deliberate or accidental, can be investigated to invalidate a life insurance claim. After two years, Quebec insurance companies are allowed to invalidate a policy if they can prove a deliberate omission.
22
The Quebec precedent, which is now spreading to other countries, means that if a person does not possess his genetic information-even innocently-he is being omissive. On the other hand, possessing it makes the data automatically disclosable to the company at the point of application. Insurers worldwide argue that if they cannot require testing, they should be permitted access to the genetic information individuals will increasingly feel obligated to gather. Either way, genetics will soon be an underwriting factor in everyone’s personal insurance.
Information from America’s MIB, and repositories like it, is often used by insurers to detect omissive statements, this as a basis for denying claims and invalidating policies. The MIB cites combating application fraud as its chief mission. Ironically, many applicants simply do not know their ancestors’ health conditions. For example, many American Jews descended from Europe do not know the exact health conditions of ancestors killed in the Holocaust or Eastern Europe’s pogroms. Many African-Americans know little of their ancestors reared in slavery or abject twentieth-century poverty. Our mobile society includes many single-parent families where little is known about ancestral health problems. The paucity of genetic information is all the more reason for insurers to press for genetic bureaus to emulate the medical and credit bureaus they currently employ.