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Lainie Friedman Ross

Publications and source records attributed to Lainie Friedman Ross.

At least 19 recordsLinked to original sources
PubMed2006

Attitudes and beliefs of pediatricians and genetic counselors regarding testing and screening for CF and G6PD: implications for policy.

There is wide variability in conditions included in state newborn screening (NBS) panels. The American College of Medical Genetics (ACMG) was commissioned by Health Resources and Services Administration to develop a uniform NBS panel. Based on survey data, the ACMG committee proposed a panel that included cystic fibrosis (CF) and glucose-6-phosphate dehydrogenase deficiency (G6PD), although G6PD was excluded from their final recommendations. We examine the attitudes of pediatricians and genetic counselors concerning screening for these two conditions. Data were collected as part of two different studies. Koopmans and Ross surveyed a random sample of 600 pediatricians from four states based on their NBS panels. Hiraki et al. surveyed genetic counselors who were members of the National Society of Genetic Counselors (NSGC) listserv. For this analysis, we compare the health care professionals' (HCPs') attitudes toward a universal NBS program for CF and G6PD, and how their support is influenced by state policy and personal interest in testing their own children. Two hundred twenty-three pediatricians and 267 genetic counselors provided partial or complete responses. Pediatricians are more likely to support NBS for both CF (84%) and G6PD (58%) than genetic counselors (56%, P < 0.001 and 39%, P < 0.001, respectively). Both pediatricians and genetic counselors' attitudes toward screening correlate with interest in screening their own children (P < 0.001). Interest in CF screening also correlates with state policy (pediatricians, P < 0.001; genetic counselors, P < 0.025). The correlation of professional recommendations with state policies and personal preferences reinforces the need for systematic evidence-based reviews rather than reliance on stakeholder opinions for developing national guidelines.

Attitude of Health Personnel↗
PubMed2006

Attitudes of genetic counselors towards expanding newborn screening and offering predictive genetic testing to children.

There is movement to expand newborn screening (NBS) to include conditions that challenge the traditional public health screening criteria. Little is known about the attitudes of genetic counselors towards expanding NBS and offering predictive genetic tests to children. For our study genetic counselors completed an internet survey posted on the National Society of Genetic Counselors Listserv regarding five conditions: cystic fibrosis (CF), Duchenne muscular dystrophy (DMD), glucose-6-phosphate dehydrogenase deficiency (G6PD), fragile X (FraX), and type 1 diabetes (T1D). The survey addressed attitudes towards: (1) testing high-risk infants; (2) mandatory NBS; (3) population screening beyond the newborn period; and (4) testing one's own child. Two hundred sixty-seven usable surveys were received. Over two-thirds of respondents supported testing high-risk infants for all conditions except T1D (22%). CF was the only condition for which there was majority support for both mandatory NBS (56%) and later population screening (60%). For all other conditions, later population screening was preferred over NBS (P <or= 0.01). Genetic counselors were most likely to test their own child for CF (46%) and least likely to test their own child for T1D (6%). For each condition, genetic counselors were more likely to support NBS if they chose to screen their own newborn (P < 0.001). Attitudes towards NBS were not influenced by year of graduation or professional experience. We can conclude that genetic counselors are supportive of targeted testing of high-risk infants. They prefer voluntary population screening with consent to mandatory NBS for conditions that challenge Wilson and Jungner criteria. Their support for NBS correlates with their interest in testing their own children and not with professional experience.

Attitude of Health Personnel↗
PubMed2006

Screening for conditions that do not meet the Wilson and Jungner criteria: the case of Duchenne muscular dystrophy.

In this manuscript, I examine four overlapping policy and ethical issues regarding screening newborns (and infants) for Duchenne muscular dystrophy (DMD). First, what are the risks and benefits of expanding newborn screening (NBS) to include DMD? Second, if NBS were to expand to include DMD, should it require informed consent? Third, should NBS for DMD be limited to boys? Why or why not? Fourth, when is the ideal timing for screening (prenatal, newborn, or later in infancy) and what factors influence this determination? I argue that decisions about when, how, and whom to test reflect a tension between maximizing uptake and diagnosis versus maximizing autonomy and choice with respect to genetic information. I conclude that screening for DMD is a valid moral option, but not as part of the mandatory NBS population program. Rather, I propose that screening for DMD should be offered only on a voluntary basis beyond the newborn period. I support offering this screening to families of young boys and girls to ensure that all children and their families can benefit from early diagnosis and its reproductive implications. A rigorous consent process will be necessary to ensure that the decision whether or not to test is a voluntary and informed choice.

Genetic Testing↗
PubMed2006

Heterozygote carrier testing in high schools abroad: what are the lessons for the U.S.?

The main value of carrier detection in the general population is to determine reproductive risks. In this manuscript I examine the practice of providing carrier screening programs in the school setting. While the data show that high school screening programs can achieve high uptake, I argue that this may reflect a lack of full understanding about risks, benefits, and alternatives, and the right not to know. It may also reflect the inherent coercion in group testing, particularly for adolescents who are prone to peer pressure. The problem of carrier screening in the schools is compounded when the condition has a predilection for certain groups based on race, ethnicity or religion. I examine programs around the world that seek to test high school students for Tay Sachs and Cystic Fibrosis carrier status. I argue that carrier programs should be designed so as to minimize stigma and to allow individuals to refuse. The mandatory school environment cannot achieve this. Rather, I conclude that screening programs should be designed to attract young adults and not adolescents to participate in a more voluntary venue.

Adolescent↗
PubMed2006

The ethical limits in expanding living donor transplantation.

The past decade has witnessed the emergence of novel methods to increase the number of living donors. Although such programs are not likely to yield high volumes of organs, some transplant centers have gone to great lengths to establish one or more of them. I discuss some of the ethical and policy issues raised by five such programs: (1) living-paired and cascade exchanges; (2) unbalanced living-paired exchanges; (3) list-paired exchanges; (4) nondirected donors; and (5) nondirected donors catalyzing cascade exchanges. I argue that living-paired and cascade exchanges are ethically sound, but will lead to only a few additional transplants. Unbalanced exchanges and list-paired exchanges raise ethical issues that should limit their permissibility. Nondirected donations can be ethically sound with adherence to strict eligibility criteria and fair allocation procedures. Nondirected donors catalyzing cascade exchanges can be ethically sound provided that individuals with blood types O and B are not made worse off.

Blood Group Incompatibility↗
PubMed2006

Does familiarity breed acceptance? The influence of policy on physicians' attitudes toward newborn screening programs.

OBJECTIVE: As newborn screening (NBS) programs expand to include conditions that challenge traditional public health criteria, little is known about what influences physicians' attitudes toward screening. We examined the effect of state policy and perceived state policy on pediatricians' attitudes toward screening. METHODS: Six hundred pediatricians from the American Academy of Pediatrics who practiced in Wisconsin, Colorado, Florida, or Illinois were queried about (1) testing high-risk infants and (2) universal NBS for cystic fibrosis (CF), glucose-6-phosphate dehydrogenase deficiency (G6PD), and type 1 diabetes. RESULTS: A total of 225 (41%) of 548 eligible pediatricians returned 223 surveys with usable data. The majority were supportive of NBS for CF (n = 188 [84%]) and G6PD (n = 130 [58%]), whereas only 25% (n = 55) supported type 1 diabetes screening. Pediatricians who lived in states that screen for a condition were more likely to support screening than those who lived in states that did not (CF: 117 of 119 [98%] vs 71 of 89 [80%]; type 1 diabetes: 32 of 88 [36%] vs 23 of 109 [21%]). Physicians also were more likely to support NBS when they believed that it was offered in their state versus when they believed that it was not (CF: 117 of 119 [98%] vs 52 of 65 [80%]; G6PD: 28 of 32 [88%] vs 75 of 108 [69%]; type 1 diabetes: 7 of 14 [50%] vs 25 of 102 [25%]). CONCLUSIONS: Most pediatricians are supportive of NBS for CF and G6PD but not type 1 diabetes. Pediatricians who live in states that screen or believe that their states screen are more likely to support screening.

Attitude of Health Personnel↗
PubMed2005

Reproduction and transplantation: report on the AST Consensus Conference on Reproductive Issues and Transplantation.

It has been almost 50 years since the first child was born to a female transplant recipient. Since that time pregnancy has become common after transplantation, but physicians have been left to rely on case reports, small series and data from voluntary registries to guide the care of their patients. Many uncertainties exist including the risks that pregnancy presents to the graft, the patient herself, and the long-term risks to the fetus. It is also unclear how to best modify immunosuppressive agents or treat rejection during pregnancy, especially in light of newer agents available where pregnancy safety has not been established. To begin to address uncertainties and define clinical practice guidelines for the transplant physician and obstetrical caregivers, a consensus conference was held in Bethesda, Md. The conferees summarized both what is known and important gaps in our knowledge. They also identified key areas of agreement, and posed a number of critical questions, the resolution of which is necessary in order to establish evidence-based guidelines. The manuscript summarizes the deliberations and conclusions of the conference as well as specific recommendations based on current knowledge in the field.

Female↗
PubMed2005

Parental attitudes and beliefs regarding the genetic testing of children.

OBJECTIVES: To explore parental attitudes and beliefs about genetic testing of children for conditions that present throughout the life cycle. METHODS: Twelve semi-structured focus groups with black and white parents were conducted. RESULTS: Across racial groups, most respondents want access to genetic testing and believe that parents should be the final decision-makers. While most respondents believe it is important to share genetic information with relatives, white respondents want physicians to respect confidentiality absolutely, whereas some black respondents accept physician disclosures in specific situations. CONCLUSIONS: Professional policy statements are restrictive about access to predictive genetic testing of children. This conflicts with parental attitudes about who should have decisional authority. While there is consensus among respondents that genetic information should be shared with relatives, respondents disagree as to who should be responsible for disclosure, and when professionals should breach patient confidentiality.

Adult↗
PubMed2005

Pediatricians' attitudes toward expanding newborn screening.

OBJECTIVE: Traditional population screening focuses on conditions for which early treatment prevents severe morbidity and mortality. The classic example in pediatrics is newborn screening for phenylketonuria, which began in the 1960s. In 1968, Wilson and Jungner delineated 10 criteria that would justify population screening. These criteria have been reaffirmed by many newborn screening task forces as the standard for adding conditions to newborn screening programs. Today, however, some newborn screening programs are expanding to include conditions that may not meet all of the traditional screening criteria. Little is known about pediatricians' attitudes toward expanding screening. We examine the attitudes of pediatricians and pediatric subspecialists toward screening for cystic fibrosis (CF), Duchenne muscular dystrophy (DMD), fragile X, and type 1 diabetes. METHODS: A cross-sectional survey was conducted of 600 pediatricians, including those who are members of the section of genetics, endocrinology, pulmonology, and neurology of the American Academy of Pediatrics. For each condition, pediatricians were queried about (1) testing high-risk infants, (2) newborn screening, and (3) population screening or testing beyond the newborn period. Demographic data were also collected. RESULTS: A total of 232 (43%) of 537 eligible pediatricians returned surveys. More than 75% support testing high-risk infants for all conditions except type 1 diabetes. CF was the only condition for which >50% supported newborn screening. Newborn screening was preferred over screening older infants for all conditions except fragile X. Subspecialty affiliation did not have a significant impact with respect to attitudes about testing high-risk children, newborn screening, or screening beyond infancy. We analyzed the data by the number of patients with the queried condition under the physician's care and by the number of affected family members. Neither aspect was significant. We also analyzed the data by gender, by year of residency graduation, and by geographic location. None of these factors revealed significant differences in responses. For each condition, 8% to 41% of physicians would personally choose to test their own infant. We found that physicians' opinion about what they would want for their own children correlated with their attitude about population newborn screening. Those who would personally choose testing of their own infants were highly likely to support newborn screening for CF (98%), DMD (94%), and fragile X (98%), but only 78% of those who would personally opt for newborn screening of type 1 diabetes would also endorse population-based screening. This was statistically significant for each condition. Those who would choose not to test their own infants were significantly less likely to support newborn screening of the general population. One third of those who did not want to test their own newborns for CF supported population screening, whereas only one fifth supported DMD and fragile X population screening. For type 1 diabetes, 98% of those who would not personally choose newborn testing did not want it offered as a population screening program. CONCLUSIONS: Most physicians support diagnostic genetic testing of high-risk children but are less supportive of expanding newborn screening, particularly for conditions that do not meet the Wilson and Jungner criteria. Willingness to expand newborn screening does not correlate with professional characteristics but rather with personal interest in testing of their own children.

Attitude of Health Personnel↗