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PubMed2006

Genetic research and testing in critical care: surrogates' perspective.

OBJECTIVE: Genetic testing is increasingly a component of clinical research in critical illness and has potential for integration into routine care. This study explored the perspectives of surrogate decision-makers (SDMs) for acutely ill patients with respect to social, legal, and ethical aspects of genetic testing. SETTING: Medical and surgical intensive care units in an urban tertiary care hospital. INTERVENTION: Questionnaires administered to SDMs for critically ill patients over a 12-month period. MEASUREMENTS AND MAIN RESULTS: A majority of eligible SDMs participated (117/146; 80.8%). SDMs were more likely to permit genetic testing for purposes of diagnosing a treatable life-threatening disease (114/117; 97.4%) or chronic disease (111/117; 94.9%) than for an untreatable life-threatening illness (95/117; 81.2%) (p < .001). SDMs were receptive to testing to explain familial traits (112/117; 95.7%) or ethnic traits (105/117; 89.7%) (p = .131). SDMs were concerned about potential for economic discrimination, with a majority expressing reluctance to permit testing if employers (93/117; 79.5%), health insurers (90/117; 76.9%), or life insurers (92/117; 78.6%) could access results. There was a greater willingness to allow participation in studies in which data were collected anonymously (90/117; 76.9%) vs. nonanonymously (75/117; 64.1%) (p = .04). Finally, SDMs placed greater trust in universities and nonprofit organizations (107/117; 91.4%) than either the federal government (75/117; 64.1%) or pharmaceutical companies (46/117; 39.3%) to perform genetic research (p < .01). CONCLUSIONS: SDMs expressed concerns regarding economic discrimination, confidentiality of data, and trust in entities conducting clinical investigation that may represent barriers both to performing studies in which genetic information is collected and to implementation of gene-based technologies in the critical care environment.

Biomedical Research↗
PubMed1999

Genetic markers to predict polygenic disease: a new problem for social genetics.

Many genetic markers that relate to common multifactorial disease in adults have been identified during the past 15 years. Their use as adjuncts for the diagnosis, prognosis, prediction of disease or targeting therapy for these disorders has begun, good examples being the Factor V Leiden mutation for venous-thromboembolism, lipoprotein lipase mutations for hypertriglyceridaemia and the apolipoprotein E4 variant for Alzheimer's dementia. However, extensive gene-gene and gene-environment interactions make their use more complex than markers for the simpler monogenic disorders (such as cystic fibrosis, or Duchenne's muscular dystrophy). Possible misapplication of the genetic markers for multifactorial disease in the fields of risk prediction, direct sales to the public, life assurance, employment rights, and legislation for regulation of their use are discussed.

Adult↗
PubMed2005

Update on HIV infection.

In the third decade of the global epidemic, it is evident that human immunodeficiency virus (HIV) disease is quite different from the disease first recognized among a small number of homosexual men in 1981. The spread of HIV has been particularly alarming in developing countries, especially sub-Saharan Africa and Southeast Asia, and it continues to threaten other populations in Eastern Europe, Latin America and the Caribbean. HIV therapeutic advances have resulted in a marked decrease in acquired immunodeficiency syndrome (AIDS) incidence and death in the United States and Western Europe. With the introduction of "triple therapy," antiretroviral treatment has resulted in an extraordinary increase in the quality of life and life expectancy among HIV-infected persons. However, the rate of decline in AIDS incidence and deaths from the latter part of 1998 through 2000 has slowed for a number of reasons. Even with the stabilization of HIV in Western countries, it remains as important as ever to follow sound insurance principles to address HIV risk. The clinical success stories have yet to be translated into the insurance realm. A very strict analysis of the medical literature will be needed.

Anti-Retroviral Agents↗
PubMed1976

Psychological response of patients cured of advanced cancer.

Psychologic testing was performed in 22 patients with advanced cancer (breast, endometrium, testis, lymphoma) who had undergone a complete remission that had been maintained for 5 to 20 years since the last therapy. The reaction to the probability of being cured was measured. The patients' overall attitude was very positive towards life and the future. They had a greater appreciation of time, life, people, and interpersonal reactions. They were less concerned about the nonessentials of life. It appeared that recovery from advanced cancer was a good experience for character development.

Adaptation, Psychological↗
PubMed2004

Older age underwriting: frisky vs frail.

The speed of the aging process is variable. Some individuals remain exceptionally fit beyond age 90, while others become frail and fragile early. Survival is better predicted by biological age (state of health, status of reserves) rather than chronological age (age in years since date of birth). The frail group shows a higher mortality compared to the robust group. When assessing the elderly in underwriting, it is important to note the usual chronic diseases such as cardiovascular disease, COPD, cancer risk, and so on. But because of its strong impact on prognosis, it is also important to assess frailty. Key features of frailty are social isolation, dependency in managing life activities and self-care, cognitive decline, shrinking of bone and muscle mass, and slow weight loss.

Activities of Daily Living↗
PubMed1993

Insurance and genetic testing: where are we now?

Basic research will spur development of genetic tests that are capable of presymptomatic prediction of disease, disability, and premature death in presently asymptomatic individuals. Concerns have been expressed about potential harms related to the use of genetic test results, especially loss of confidentiality, eugenics, and discrimination. Existing laws and administrative policies may not be sufficient to assure that genetic information is used fairly. To provide factual information and conceptual principles upon which sound social policy can be based, the Human Genome Initiative established an Ethical, Legal, and Social Issues Program. Among the first areas to be identified as a priority for study was insurance. This paper provides a review of life, health, and disability insurance systems, including basic principles, risk classification, and market and regulatory issues, and examines the potential impact of genetic information on the insurance industry.

Persons with Disabilities↗
PubMed2000

Underwriting considerations for dissociative disorders.

OBJECTIVE: Dissociative identity disorder (DID) has been diagnosed more frequently and is under greater scrutiny. Because of the number of comorbid conditions, the underwriting risks must be evaluated to determine morbidity and mortality implications. BACKGROUND: The number of diagnosed cases of DID has increased in recent years. The diagnosis often coexists with other diagnoses such as bipolar disorder, major depression, post-traumatic stress disorder, anxiety disorder, somatization, personality disorders, and psychotic disorder. A high incidence of substance abuse and eating disorders is found in the population diagnosed with DID. METHODS AND RESULTS: A query of disability claim experience with DID indicated that these claims tended to reach the maximum duration for mental/nervous benefits despite case management and return to work activities. CONCLUSIONS: The DID psychiatric population is a complex group with mental disorders that place them in a group likely to use maximum disability benefits and who would pose increased life underwriting risk. In addition, the literature indicates a high excess risk for early mortality and excess health care expenses compared to the normal population.

Adult↗
PubMed1994

[Benign and malignant diseases of the prostate].

Due to higher male life expectancy coupled with increasing demand for insurance amongst older men, diseases of the prostate are becoming more significant in life insurance medicine. Suitable diagnostic procedures differentiate to a large extent between carcinoma of the prostate gland and prostatic hyperplasia or prostatitis. Acute as well as chronic prostatitis can be cured and, in general, has no effect on life expectancy. Depending on the staging classification, benign prostatic hyperplasia can be treated conservatively by medication, by alternative heat treatment or surgical resection of the prostate. Advantages and incidence of complications of the different therapeutic methods are being described. The perioperative mortality risk as well as secondary renal complications need to be considered from an insurance medical point of view and may require a mortality loading. Only stages T1 and T2 prostatic carcinoma can be cured by surgery. New discoveries of the morphologic structure of the prostate gland and more sophisticated surgical methods in radical prostatectomy have reduced mortality. The incidence of post surgical complications has also decreased, when the life expectancy of the patient exceeds ten years. This results in a more favourable insurance medical assessment than that of several years ago. Stages T3 and T4 prostatic carcinoma normally require palliative treatment. On the basis of the latest research, "watchful waiting" is gaining importance as against therapeutic concepts at the time of diagnosis. Besides the tumour staging, the presence of lymph node metastases or distant metastases are relevant from an insurance medical point of view.

Adult↗
PubMed1990

[Life expectancy and risk assessment in decreased glucose tolerance (subclinical diabetes)].

The term Impaired Glucose Tolerance (IGT) has replaced the term Subclinical Diabetes (SD). It corresponds to a grey zone between normal glucose tolerance (GT) and diabetic glucose intolerance which by definition can be determined only by an oral glucose tolerance test. Pathogenetically, and impaired glucose tolerance constitutes a risk factor for the formation of atherosclerosis and in about 30% of cases represents a pre-stage of diabetes mellitus. No mortality statistics are as yet available for insureds with impaired glucose tolerance. We may, however, assume with good reason that their relative mortality lies between the comparable values of insureds with normal glucose tolerance and those with type 2 diabetes. The relative mortality of type 2 diabetes is calculated on the basis of the American Medical Impairment Study 1983 and the Swiss Re study on diabetes mellitus and the relative mortality of insureds with impaired glucose tolerance is then determined on that basis. Finally, a possible course of action for the risk assessment of applicants with impaired glucose tolerance is proposed and the expected extra mortality rates are given.

Adolescent↗
PubMed2001

Ethical implications of genetic testing for breast cancer susceptibility.

The identification of gene mutations involved in hereditary breast cancer is a major recent scientific discovery, enabling us to identify women at very high risk, and also providing the means to understand the biology of breast cancer and to explore novel preventive strategies. Yet, it carries medical, psychological, ethical and social implications. This paper is a review of all the ethical implications of genetic testing for breast cancer predisposition, as well as an attempt to discuss the more philosophical questions of women facing BRCA testing. To what extent does the individual benefit from genetic knowledge? Some women look with trepidation upon the potential of planning their life in view of a risk, while others believe that only through knowledge and awareness we can improve control of our life. The risk of breast cancer may be qualitatively so important to justify all the potential risks of finding out about it.

Adoption↗
PubMed2000

Structured settlement annuities, part 2: mortality experience 1967--95 and the estimation of life expectancy in the presence of excess mortality.

BACKGROUND: the mortality experience for structured settlement (SS) annuitants issued both standard (Std) and substandard (SStd) has been reported twice previously by the Society of Actuaries (SOA), but the 1995 mortality described here has not previously been published. We describe in detail the 1995 SS mortality, and we also discuss the methodology of calculating life expectancy (e), contrasting three different life-table models. RESULTS: With SOA permission, we present in four tables the unpublished results of its 1995 SS mortality experience by Std and SStd issue, sex, and a combination of 8 age and 6 duration groups. Overall results on mortality expected from the 1983a Individual Annuity Table showed a mortality ratio (MR) of about 140% for Std cases and about 650% for all SStd cases. Life expectancy in a group with excess mortality may be computed by either adding the decimal excess death rate (EDR) to q' for each year of attained age to age 109 or multiplying q' by the decimal MR for each year to age 109. An example is given for men age 60 with localized prostate cancer; annual EDRs from a large published cancer study are used at duration 0-24 years, and the last EDR is assumed constant to age 109. This value of e is compared with e from constant initial values of EDR or MR after the first year. Interrelations of age, sex, e, and EDR and MR are discussed and illustrated with tabular data. CONCLUSIONS: It is shown that a constant MR for life-table calculation of e consistently overestimates projected annual mortality at older attained ages and underestimates e. The EDR method, approved for reserve calculations, is also recommended for use in underwriting conversion tables.

Compensation and Redress↗
PubMed1982

Long-term follow-up of patients with malformations for which definitive surgical repair has been available for 25 years or more.

The results of long-term follow-up studies of patients with five common congenital heart defects are reviewed. The lesions included are ventricular septal defect, atrial septal defect, patent ductus arteriosus, pulmonary stenosis and coarctation of the aorta. A definitive, rather than palliative, operation has been available for each of these lesions for more than 25 years. Therefore many patients who have undergone operation for one of these lesions are now reaching adulthood. Although most of these postoperative patients live a normal life, many have residuae or sequelae that require close observation or treatment. Other persistent abnormalities of the physical examination, electrocardiogram and chest radiogram are obvious but call for no precaution or treatment. We have drawn on our own experience and the published experience of others to identify those findings and historical factors that best reflect the long-term prognosis of these patients. In addition, recommendations concerning the need for continued prophylaxis against infective endocarditis, and the problems of insurability and employability of these postoperative patients are discussed.

Adult↗
PubMed2001

Changes in finances, insurance, employment, and lifestyle among persons diagnosed with hairy cell leukemia.

BACKGROUND: While being cured of cancer generally leads to a life expectancy similar to that of the general population, the extent to which other aspects of life are affected is unknown. To address these concerns, patients with hairy cell leukemia, a cancer with a very high cure rate, were queried about employment, insurance, finances, and lifestyle during and following their treatment. METHODS: Study participants (n = 31) ranging in age from 24 to 73 years at the time of diagnosis (median, 49 years) were surveyed regarding changes in health and life insurance, employment, out-of-pocket medical costs, exercise, diet, and use of mental and alternative health services that occurred during or following hairy cell leukemia treatment. RESULTS: Following a diagnosis of hairy cell leukemia, 61.3% of the respondents paid for some aspect of medical care in spite of having health insurance coverage at the time of diagnosis. Four respondents (12.9%) could not obtain health insurance following treatment, and the occupational choices of several individuals or their spouses were based in large part on a desire to obtain or maintain comprehensive health insurance. Of the 13 individuals who attempted to purchase life insurance, 10 had difficulty obtaining a policy or were denied coverage. Lifestyle changes were noted by 40% to 60% of respondents, and included reports of more frequent exercise, adoption of a healthier diet, and having a greater appreciation for life, loved ones, and physical health. CONCLUSIONS: While hairy cell leukemia is a highly curable malignancy, cancer survivors' lives and lifestyles are altered substantially after receiving treatment for the illness.

Adult↗
PubMed2002

Self-reported health: potential life underwriting tool?

Any approach that adds speed and efficiency to the underwriting process provides a competitive edge in today's fast changing financial services industry. The acquisition of data for medical underwriting has always been a challenge; with the traditional attending physician statement process adding time, real costs, and opportunity costs to manufacturing life products. Is there any potential for the use of self-reported medical and health history data in medical underwriting assessment? This article reviews published research on the uses and the validity of self-reported health data as it has been applied in current medical and public health practices. Whether self-reported medical history is valid data that can be applied in the underwriting context remains an open question.

Chronic Disease↗
PubMed1992

Long term impact of a fitness programme--the Canada Life Study.

Information gathered over twelve years operation of the Canada Life Assurance fitness programme is reviewed. Motives leading to programme initiation included sale of a health-related product, managerial interest, and government and university support. Participation is now a little under capacity, at about 13% of eligible staff. Except in a small minority of members, the impact upon physical condition and lipid profile has been marginal. The reported community exercise participation of employees has increased since initiation of the programme. An early reduction of employee turnover has been sustained in programme participants. A reduction of absenteeism is limited to enthusiastic participants, with a 0.13% payroll saving for the company as a whole. An early analysis suggested a substantial Hawthorne effect, but a 2.7% gain of productivity relative to a matched control company. Medical insurance claims were also lowered in the first year after introduction of the programme, probably because of gains in perceived health. The Canadian Health Hazard Appraisal instrument showed a two-year reduction of appraised age in male participants. The gymnasium area was developed at a cost of about $175,000, or $700/m2 1990 Canadian dollars, and the current operating budget is about $110,000/year. The 400 members each pay $55/year, and the company provides an operating subsidy of about $200/member. Overall findings suggest the programme remains cost-effective and cost-beneficial.

Absenteeism↗