The Economics of Personalization in Prevention and Public Health

Personalized prevention uses family history and predictive genetic testing to identify people at high risk of serious diseases. The availability of predictive genetic tests is a newer and still-developing phenomenon. Many observers see tremendous potential for personalized prevention to improve public health. At the same time, the emergence of these new markets raises familiar health policy concerns about costs, cost-effectiveness, and health disparities. This paper first discusses an economic framework for the analysis of personalized prevention. On the demand side, consumers use personalized prevention as a form of information that allows them to make better choices about prevention, including medical care and health behaviors like diet and exercise. On the supply side, an interplay of complex market forces and regulations will determine the prices, advertising, and insurance coverage of predictive genetic tests. Beyond the question of whether health insurance will cover the costs of predictive genetic tests, there is a great deal of concern about whether consumers’ use of genetic tests might place them at risk of genetic discrimination or might lead to adverse selection. The paper also reports descriptive analysis of data from the 2000, 2005, and 2010 National Health Interview Surveys on the use of predictive genetic tests. The empirical analysis documents large socioeconomic status-related disparities in consumers having heard of genetic tests: for example, consumers with less schooling, Blacks, and Hispanics were substantially less likely to have heard of genetic tests. Evidence from other empirical studies provides little evidence that genetic testing leads to genetic discrimination in insurance markets. There is more evidence suggesting adverse selection, where genetic testing leads consumers to purchase long-term care insurance. The paper concludes with some preliminary thoughts about important directions for future research. The goal of the paper is to review relevant research to help develop an economic approach and social science research agenda into the determinants and consequences of genetic tests for prevention.

Consumer preferences for the predictive genetic tests for Alzheimer’s disease

With the advent of predictive genetic tests, individuals will have the option to investigate their future risk of developing diseases like Alzheimer’s disease (AD). This knowledge can benefit people as they start to prepare themselves as well as their families for the disease process. The use of predictive genetic tests will likely increase as technology and genetic marker identification continues to advance. Thus, aligning the clinical practice of predictive genetic testing for Alzheimer’s disease with patient values and preferences has the potential to improve healthcare delivery. Several issues have been identified in this review regarding people’s preference when making a decision to test for AD, which include prediction value (i.e. false-positive/false-negative results), availability of treatments that would prevent or delay onset of AD, and anonymity/confidentiality. Literature indicates the most relevant issues regarding consumer preference for AD genetic testing is predictive value (accuracy). While fewer studies have discussed the effects of treatment availability or anonymity on consumer preference, these issues may become more important as technology continues to advance and public awareness of these issues increases. Future research in the area of consumer behavior with regard to predictive genetic testing is suggested.Most previous studies regarding consumer intent and preference for AD genetic tests have used small samples, convenience samples, or samples which were predominantly Caucasian, female and high socioeconomic status. Additionally, effects of most socio-demographics on the preference for AD genetic test are unclear in the literature. Conflicting results have been found regarding gender, education, income, and culture. An extension of the previous work using a larger and randomized sample may help to provide clearer relationship between these socio-demographics and consumer preference for AD genetic test.

Determinism and free will in the age of genetics: Theoretical-legal concerns about predictive genetic tests

The paper deals with the use of predictive genetic tests in medical research. I limit my discussion to those advances in genetics which try to overcome the limits represented by our genetic make-up, in particular by gene mutations that lead, or could lead, to the development of genetic diseases. Besides the ethical issues concerning the topic of the current discussion, the reader will also find an evaluation of the legal provisions elaborated at the different levels of the legal order (international, European, and national). The aim of this evaluation is to find out which model of Law is being adopted in bioethical issues like the one discussed in this paper. The paper underlines and argues how Law can contribute (and has already contributed at the different levels: International, European, and national) to value and to spread an ethics of responsibility.

Currents in Contemporary Bioethics

Recently, an agonizing twist intersecting predictive genetic tests and surrogacy contracts made news headlines in Canada. The intended parents, a couple from British Columbia, instructed the surrogate mother with whom they were working to undergo First Trimester Screening and Chorionic Villi Sampling (CVS), which revealed the fetus likely had Down syndrome. The parents directed the surrogate to terminate the fetus or they would abdicate their parental claim upon birth. This story raised numerous legal and ethical questions relating to the transferability of decision making for prenatal screening, diagnostic tests, and the connected decision of termination when additional interested parties – the intended parents – are involved in the medical decision-making relationship. First, although the surrogate is the patient, what are the implications when the intended parents' wishes influence or even dictate the relationship between her and her obstetrician and genetic counselor? Second, if the intended parents' level of authority reaches explicit demands, may the intended parents ethically and legally require the surrogate to waive her right to informed consent for prenatal screening and diagnosis?