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Biomedical subjects

L M Fleck

Publications and source records attributed to L M Fleck.

13 recordsLinked to original sources
PubMed1997

The clinical introduction of genetic testing for Alzheimer disease. An ethical perspective.

OBJECTIVE: Primary caregivers should be aware of recent progress in the genetics of Alzheimer disease (AD) and of the clinical and ethical considerations raised regarding the introduction of genetic testing for purposes of disease prediction and susceptibility (risk) analysis in asymptomatic individuals and diagnosis in patients who present clinically with dementia. This statement addresses arguments for and against clinical genetic testing. PARTICIPANTS: The 20 participants were selected by the investigators (S.G.P., T.H.M., A.B.Z., and P.J.W.) to achieve balance in the areas of genetics, counseling, ethics, and public policy, and to include leadership from related consensus projects. The consensus group met twice in closed meetings and carried on extensive correspondence over 2 years (1995-1997). The project was supported by the National Human Genome Research Institute of the National Institutes of Health. EVIDENCE: All 4 involved chromosomes were discussed in group meetings against a background of information from several focus group sessions with AD-affected families. The focus groups comprised volunteers identified by the Cleveland Area Chapter of the Alzheimer's Disease and Related Disorders Association and represented a variety of ethnic populations. CONSENSUS PROCESS: The first draft was written in April 1996 by the principal investigator (S.G.P.) after the consensus group had met twice. The draft was mailed to all consensus group members 3 times over 6 months for extensive response and redrafting by the principal investigator until all members were satisfied. CONCLUSIONS: Except for autosomal dominant early-onset families, genetic testing in asymptomatic individuals is unwarranted. Use of APOE genetic testing as a diagnostic adjunct in patients already presenting with dementia may prove useful but it remains under investigation. The premature introduction of genetic testing and possible adverse consequences are to be avoided.

Advisory Committees↗
PubMed1994

Just caring: Oregon, health care rationing, and informed democratic deliberation.

This essay argues that our national efforts at health reform ought to be informed by eleven key lessons from Oregon. Specifically, we must learn that the need for health care rationing is inescapable, that any rationing process must be public and visible, and that fair rationing protocols must be self-imposed through a process of rational democratic deliberation. Part I of this essay notes that rationing is a ubiquitous feature of our health care system at present, but it is mostly hidden rationing, which is presumptively unjust. Part II argues that the need for health care rationing is inescapable. Although Oregon is flawed as a model of health rationing, it gives us worthy moral lessons for health reform at the national level, which I analyze and defend in Part III. The most significant of these lessons is the importance of rational democratic deliberation in articulating fair rationing protocols for a community. In Part IV I sketch the philosophic justification for this approach and respond to some important criticisms from Daniels.

Community Participation↗
PubMed1994

Just caring: health reform and health care rationing.

Health reform must include health care rationing, both for reasons of fairness and efficiency. Few politicians are willing to accept this claim, including the Clinton Administration. Brown and others have argued that enormous waste and inefficiency must be wrung out of our health care system before morally problematic cost constraining options, such as rationing, can be justifiably adopted. However, I argue that most of the policies and practices that would diminish waste and inefficiency include implicit (and therefore morally problematic) rationing. Critics of rationing see as its most morally and psychologically troubling feature that an identified individual is denied potentially beneficial care. That psychic anguish may not be eliminable, and perhaps ought not be eliminated. But if rationing protocols are fairly adopted through a process of free and informed rational democratic deliberation to which all have access, the moral objections are largely overcome. Such a process is possible only if implicit rationing is recognized and rejected.

Advisory Committees↗
PubMed1989

Just health care (II): Is equality too much?

In a previous essay I criticized Engelhardt's libertarian conception of justice, which grounds the view that society's obligation to assure access to adequate health care for all is a matter of beneficence. Beneficence fails to capture the moral stringency associated with many claims for access to health care. In the present paper I argue that these claims are really matters of justice proper, where justice is conceived along moderate egalitarian lines, such as those suggested by Rawls and Daniels, rather than strong egalitarian lines. Further, given the empirical complexity associated with the distribution of contemporary health care, I argue that what we really need to address the relevant policy issues adequately is a theory of health care justice, as opposed to an all-purpose conception of justice. Daniels has made an important start toward that goal, though there are some large policy areas which I discuss that his account of health care justice does not really speak to. Finally, practical matters of health care justice really need to be addressed in a 'non-ideal' mode, a framework in which philosophers have done little.

Delivery of Health Care↗
PubMed1989

Just health care (I): Is beneficence enough?

Few in our society believe that access to health care should be determined primarily by ability to pay. We believe instead that society has an obligation to assure access to adequate health care for all. This is the view explicitly endorsed in the President's Commission Report Securing Access to Health Care. But there is an important moral ambiguity here, for this obligation may be construed as being either beneficence-based or justice-based. A beneficence-based construal would yield a much weaker obligation with respect to the distribution of health care. In the first section of this paper I argue that the President's Commission is committed only to this weaker construal of this obligation. In the second section I argue that such a beneficence-based obligation is really rooted in a libertarian conception of justice, similar to that recently articulated by Engelhardt, and that this conception is seriously flawed when it comes to effecting a just distribution of health care.

Advisory Committees↗
PubMed1987

DRGs: justice and the invisible rationing of health care resources.

Are DRGs just? This is the primary question which this essay will answer. But there is a prior methodological question that also needs to be addressed: How do we go about rationally (non-arbitrarily) assessing whether DRGs are just or not? I would suggest that grand, ideal theories of justice (Rawls, Nozick) have only very limited utility for answering this question. What we really need is a theory of "interstitial justice," that is, an approach to making justice judgments that is suitable to assessing the social practices and institutions that comprise the interstices of our social life as opposed to its basic structure. Rawls's appeal to "our considered moral judgments" provides us with a useful starting point for this task, which we shall discuss in the first part of this essay. In the second part, we shall actually assess DRGs from the perspective of interstitial justice. What we shall show is that DRGs violate a large number of our considered judgments regarding a just approach to financing health care for the elderly in a cost-effective manner. This is true to such an extent that efforts to reform DRGs and make them fairer, such as the recent effort by Robert Veatch, should be abandoned. In the concluding section of the essay we discuss one especially pernicious feature of DRGs, namely, that they represent an invisible approach to rationing access to health care. In the minds of many this is one of the virtues of DRGs. That claim needs critical examination.

Aged↗
PubMed1986

Confidentiality: moral obligation or outmoded concept?

The frequency with which casual breaches of confidentiality occur in hospitals suggests that relatively few health care professionals regard confidentiality as a matter of serious moral concern. A number of factors contribute to this laxness. First, breaches are almost never motivated by malice. Second, the person who breached confidentiality will probably be unaware of any harm that may result or of his or her role in having caused it. Third, such harm likely will consist of feelings of shame and embarrassment--consequences that lack moral seriousness for many persons. Finally, the sheer quantity of patient information that is supposed to be confidential, combined with the number of personnel who have a legitimate "need to know," militates against any serious attitude toward confidentiality. But confidentiality is a serious moral issue. An essential element of self-identity is the right to choose who has access to the intimate details of our lives. To undermine that right is to undermine individual autonomy. A number of steps can be taken to strengthen a hospital's commitment to confidentiality: Upon admission, nonemergency patients should be informed of who will have access to their medical record and why. patients should be asked who should be kept informed of the details of their medical condition and who should be denied such details. Health care professionals should not be intimidated by persons who demand patient information but have no clear right to it. Such individuals should be referred to someone who can determine whether they are entitled to the information.

Confidentiality↗