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Lainie Friedman Ross

Publications and source records attributed to Lainie Friedman Ross.

At least 19 recordsLinked to original sources
PubMed2003

Parental attitudes regarding newborn screening of PKU and DMD.

The ability to perform predictive genetic testing of children raises ethical concerns. Current guidelines support the screening of newborns for conditions in which early treatment reduces morbidity and mortality, and oppose most other predictive genetic screening and testing in childhood. Little is known, however, about parental attitudes. We conducted focus groups to gain information on the attitudes, beliefs, and concerns of parents about newborn screening and testing for both treatable and untreatable conditions that present in childhood. Respondents across racial groups support mandatory newborn screening for treatable conditions like phenylketonuria (PKU), citing lack of parental knowledge, and concerns about immature parental decision-makers. Parents do, however, want more information. Citing a variety of psychosocial concerns, respondents believe that parents should have access to predictive genetic testing for childhood onset conditions, even when there are no proven treatments. Respondents want this information to make reproductive and non-reproductive plans and decisions. Although respondents varied in their personal interest in testing, overwhelmingly they believed that the decisions belong to the parents. Professional guidelines that proscribe predictive testing for untreatable childhood onset conditions should be re-examined in light of consumer attitudes.

Age of Onset↗
PubMed2003

Minimizing risks: the ethics of predictive diabetes mellitus screening research in newborns.

Type 1 diabetes mellitus is the most common metabolic disease of childhood. Two states offer newborn screening to identify children with a genetic predisposition to it. It is a voluntary test offered in conjunction with the mandatory newborn metabolic screening. There are no preventive treatments, but children discovered to be at increased risk may participate in follow-up studies to determine whether and when the child develops autoantibodies (preclinical disease) or overt diabetes. This study examined the ethics of predictive genetic research in newborns for type 1 diabetes. Prediction research has serious psychosocial implications, and research designs must account for them. The study concluded that, to minimize harm to infants and their families, (1) if the research does not incorporate a prevention strategy, studies should avoid disclosure of results; and (2) if disclosure is necessary, then the research should be restricted to newborns with an affected first-degree relative.

Diabetes Mellitus, Type 1↗
PubMed2003

Responding to the challenge of the children's health act: an introduction to children in research.

This overview describes the breadth of topics covered in this volume devoted to children in research. It summarizes how these articles are interrelated and how they all respond to the challenge proposed by the Children's Health Act of 2000: to consider what modifications, if any, are necessary to current regulations "to ensure the adequate and appropriate protection of children participating in research."

Child↗
PubMed2003

The ethics of type 1 diabetes prediction and prevention research.

There are approximately one million cases of type 1 diabetes in the US, and the incidence is increasing worldwide. Given that two-thirds of cases present in childhood, it is critical that prediction and prevention research involve children. In this article, I examine whether current research methodologies conform to the ethical guidelines enumerated by the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, and adopted into the federal regulations that protect research subjects. I then offer two policy recommendations to help researchers design studies that conform to these ethical requirements.

Child↗
PubMed2003

Professional and personal attitudes about access and confidentiality in the genetic testing of children: a pilot study.

The ability to perform predictive genetic testing of children raises ethical concerns regarding whether and when to test and the disclosure of results. Semi-structured interviews with a convenience sample of pediatricians (12) and geneticists (13) were conducted to see how they would react to parental requests for predictive genetic testing of their children, and their attitudes about testing their own children. We also asked about disclosure attitudes and practices for their patients' relatives and within their own families. Respondents would provide predictive genetic testing for most conditions, yet were less likely to seek this information about their own children. Respondents believed it was very important for patients to share some types of genetic information with relatives, and were directive in their counseling about intrafamilial disclosure, especially within their own families. Although respondents would almost never breach patient confidentiality, many would breach confidentiality within their own families. Health care professionals distinguish between their professional and personal roles with regard to issues of access and confidentiality in predictive testing of children. They are willing to provide greater access and more confidentiality for their patients than within their own families.

Access to Information↗
PubMed2002

Should all living donors be treated equally?

Recently, Matas et al. described a protocol to accept as potential donors altruistic strangers who offer to donate a kidney to any patient on the waiting list. The selection of donors would be the same as the process they use for living, emotionally related donors, except that the full work-up would have to be done at their institution and would include a detailed psychosocial evaluation. In this article, we present a case that raised the question of whether the medical standards for nonemotionally related donors should be the same as the standards for emotionally related donors. We argue that we must distinguish between the altruistic donation by a stranger and the voluntary donation by an emotionally related individual. We argue that voluntary donations have a degree of moral obligation based on intimacy and that intimacy allows, but does not require, that these donors take on slightly additional risk.

Adult↗
PubMed2002

Predictive genetic testing for conditions that present in childhood.

There is a general consensus in the medical and medical ethics communities against predictive genetic testing of children for late onset conditions, but minimal consideration is given to predictive testing of asymptomatic children for disorders that present later in childhood when presymptomatic treatment cannot influence the course of the disease. In this paper, I examine the question of whether it is ethical to perform predictive testing and screening of newborns and young children for conditions that present later in childhood. I consider the risks and benefits of (1) predictive testing of children from high-risk families; (2) predictive population screening for conditions that are untreatable; and (3) predictive population screening for conditions in which the efficacy of presymptomatic treatment is equivocal. I conclude in favor of parental discretion for predictive genetic testing, but against state-sponsored predictive screening for conditions that do not fulfill public health screening criteria.

Age of Onset↗
PubMed2002

Media appeals for directed altruistic living liver donations: lessons from Camilo Sandoval Ewen.

Recently, a Canadian couple sought media help to find a person who was willing to donate part of his or her liver to their infant son, Camilo Sandoval Ewen, who suffered from biliary atresia. Although Canadian transplant programs do not perform transplants from non-emotionally related living donors, they are accepted by some U.S. transplant centers, particularly when donated in a nondirected fashion. This paper examines the ethical questions raised by media appeals for directed altruistic living donations of solid organs, specifically liver lobes, and argues that media-directed altruistic donations are ethically problematic. While they can and do succeed, they raise ethical concerns regarding (1) who has access to the media; (2) who will be successful in their media campaigns; and (3) how coercion and inducement by brokers (families or institutions) can be prevented. Justice requires that the media adopt a policy not to cover organ appeals by families, despite their human interest value, and that transplant centers develop a unified policy restricting directed living donations to those who have an emotional relationship.

Adult↗
PubMed2002

Are research ethics standards satisfied in pediatric journal publications?

BACKGROUND: The requirements for institutional review board (IRB) review and informed consent (IC) for research involving human subjects have existed for more than 2 decades. Although many studies document them poorly, most published research undergoes IRB review and has IC procedures. Less is known about research published in pediatric journals, and how child health research is determined to be exempt. METHOD: All full-length articles published in the paper edition of 3 pediatric journals between January and December 2000 were examined. Articles were excluded if they were case studies, meta-analyses, lacked empirical data, or did not include at least 1 US researcher or US subjects. The remaining articles were examined to determine if they documented IRB review and IC mechanisms. If either or both of these features were missing, authors were asked to participate voluntarily in a survey. In addition, all exempt articles were examined to determine if the exemptions were in accordance with the federal regulations for the protection of human subjects. RESULTS: Three hundred seventy-nine of 575 articles met inclusion criteria. One hundred ninety-seven (52.0%) documented IRB review, 164 (43.3%) documented IC, and 131 (34.6%) properly documented the presence of both IRB review and IC. Two hundred fifty-one researchers were surveyed to clarify IRB review and/or IC mechanisms. Approximately 13.5% of the research had not undergone IRB review, and 12.4% had not had their consent methods reviewed by an IRB. We found that between 26.9% and 39.8% of exempted research did not meet federal regulations requirements. CONCLUSIONS: We found that most research underwent IRB review and had a consent mechanism despite the lack of documentation in the articles. We also found that most research that did not undergo IRB review would have been exempt under current guidelines. However, a significant number of IRB- and researcher-exempted research were inappropriately classified. Improving research ethics standards will require additional education for researchers and IRB members, and greater adherence of researchers (and editors) to the journals' guidelines on these issues.

Ethics Committees, Research↗