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PubMed2004

Disclosing to parents newborn carrier status identified by routine blood spot screening.

BACKGROUND: Newborn blood spot screening programmes are designed to detect serious conditions affecting individuals, where early treatment can improve health. It is suggested that screening can improve the experience of diagnosis for parents. For example, without newborn screening, when a child with cystic fibrosis becomes symptomatic a period of uncertainty can arise prior to diagnosis. These potential advantages of screening need to be weighed against potential disadvantages of screening at individual and population levels. Some newborn screening programmes inadvertently identify newborn infants who, although not affected by the condition, carry a gene for it and can pass on that gene to their children; these are 'genetic carriers'. Knowledge of newborn carrier status can lead to: testing of parents and family members, and concern about possible affected future siblings should both parents be identified as carriers; the possibility of such testing revealing the putative father is not the biological father; concern about the child's future reproductive choices; and unjustified anxiety about the health of the carrier newborn. There is an urgent need to develop clear guidance as to how to respond, with advances in technology fuelling the expansion of newborn blood spot screening and raised expectations of informed consent and disclosing test results. Depending on the condition for which screening is offered, options include: employing tests that do not identify carrier status, if available; identifying acceptable ways of disclosing carrier status; or identifying acceptable ways of not disclosing carrier status. These options are illustrated by screening programmes for sickle cell disorders and cystic fibrosis. Currently, there are no screening tests available for sickle cell disorders that do not identify carrier status. For cystic fibrosis, the policy choice is between an extended period of testing, and a screening result that is available sooner for most newborns, but inadvertently identifies carrier babies. OBJECTIVES: The aim of this review was to assess the impact of disclosing to parents newborn carrier status inadvertently identified by routine newborn blood spot screening. SEARCH STRATEGY: We searched for reports addressing disclosing newborn carrier status to parents following newborn screening for sickle cell disorders and cystic fibrosis in: commercially available electronic databases (October 2002), specialist registers, online journals, online abstracts and conference abstracts. We also scanned the reference lists of included papers. SELECTION CRITERIA: Studies addressing the impact of disclosing carrier status using a soundly controlled trial or randomised controlled trial. DATA COLLECTION AND ANALYSIS: Two researchers independently scanned titles and abstracts for relevance using the pre-specified inclusion criteria. Full reports of selected citations were then located and screened again for relevance by two researchers independently. At each stage, results were compared and discrepancies resolved by discussion. MAIN RESULTS: We found no controlled trials about disclosing carrier status. REVIEWERS' CONCLUSIONS: There is a need to develop and evaluate the effects of interventions to support the disclosure of carrier status to parents following newborn screening.

Cystic Fibrosis↗
PubMed2005

Grief work, disclosure and counseling: do they help the bereaved?

Bereavement is associated with increased risk of morbidity and mortality. How to protect the bereaved against extreme suffering and lasting health impairment remains a central research issue. It has been widely accepted that to adjust, the bereaved have to confront and express intense emotions accompanying their loss. It has further been assumed that others assist in this process, and that intervention programs are effective. To assess validity of these assumptions, this article reviews research on the impact of expressing and sharing emotions across four research domains (social support; emotional disclosure; experimentally induced emotional disclosure; and grief intervention). In none of these areas is there evidence that emotional disclosure facilitates adjustment to loss in normal bereavement. Implications of these findings are discussed.

Adaptation, Psychological↗
PubMed1989

AIDS and confidentiality.

AIDS has created many challenges for those who provide care for AIDS patients. One major challenge has been the request of many public officials for healthcare professionals to abandon the traditional view of confidentiality and to reveal AIDS patients' names. This ethical dilemma is explored and some ethical theories are presented as possible resolutions. The conclusion presented is that healthcare professionals must recognize that the power of the healthcare system over an AIDS patient is immense. Therefore, healthcare professionals must make a commitment to protect the patient's right to privacy by preventing any unauthorized disclosure at all costs.

Acquired Immunodeficiency Syndrome↗
PubMed1997

Bioethical aspects of HIV infection in children.

The care of HIV-infected children is fraught with many bioethical conflicts and dilemmas that require careful attention if care is to be provided appropriately. Understanding of the interplay of such general principles as autonomy, nonmaleficence, confidentiality, and veracity helps to clarify the nature of specific conflicts. This article addresses both general principles and their specific applications to pediatric patients with HIV infection. It addresses these matters from the points of view both of patients and parents. It shows why conflict is practically inevitable, and it points the way toward prevention and resolution of conflict. Practical guidelines are provided in relation to the critical problem of disclosure of diagnosis to the patient.

Acquired Immunodeficiency Syndrome↗
PubMed2002

Mea culpa, mea culpa: a call for privilege for self-disclosure of error in the setting of primary medical education.

Medical errors cause 44,000 to 98,000 deaths per year, which is due, in part, to the lack of privileged self-reporting systems. Such systems are of great value to the medical community, especially to new doctors and to medical students. Nonetheless, because documents produced for self-reporting conferences and statements made against self-interest are admissible in court, many observers believe that doctors are discouraged from self-reporting errors. The author proposes the creation of a new medical self-disclosure privilege to protect and promote self-reporting systems, which will lead to a reduction in medical errors.

Education, Medical↗
PubMedDate not supplied

Willingness to pay for antenatal carrier screening for cystic fibrosis.

We report on a study of women's willingness to pay (WTP) for a cystic fibrosis carrier test by one or other method of service delivery (disclosure or non-disclosure). The results demonstrate that there was no statistically significant difference in WTP for the methods of testing. Those women who received a negative test result were followed up and asked their WTP for such a result. Values obtained at this stage were 16 per cent higher than those obtained pretest result. Use of prompts, rather than simply asking women to state their WTP, had a statistically significant effect on post-test result values. The opportunity to terminate the pregnancy, if a test proved positive, was important, but was not the only consideration. This demonstrates the importance to women of other benefits of screening.

Abortion, Eugenic↗
PubMed1992

How should parents be informed about major procedures? An exploratory trial in the neonatal period.

The current doctrine of informed consent in medical practice may require the provision of more information than is understandable or desired by some parents. We conducted an exploratory trial comparing: (1) detailed risk/benefit disclosure provided both verbally and in writing and (2) flexible disclosure consisting of a brief verbal description supplemented with detailed verbal and written disclosure if desired by the mother. Information about mechanical ventilation was presented to 26 mothers of newborns at risk for respiratory failure. Of the 13 mothers in the flexible disclosure group, seven (54%) desired only brief verbal disclosure. Despite poor recall of information, most mothers were satisfied with the information provided. There was no evidence that the detailed disclosure group had greater maternal satisfaction or less maternal anxiety. Flexible disclosure as evaluated in this study had no important disadvantages relative to detailed disclosure. Methods of providing information to better meet the wants and needs of parents deserve further study.

Adolescent↗
PubMed1996

Common ethical dilemmas encountered in the management of HIV-infected women and newborns.

The clinical management of the HIV-infected pregnant woman and newborns involves multifaceted ethical challenges. We have argued that rights-based approaches, based on a civil rights model, are not adequate to clinically address these challenges. We have argued instead for a more nuanced ethical framework that emphasizes the beneficence-based obligations of the physician of the pregnant woman, to the fetal patient, and to the newborn, as well as the beneficence-based obligations of the pregnant woman to the fetal patient and to the newborn. The ethical principle of respect for autonomy shapes the counseling process about termination of pregnancy, contraception, and advance directives.

Adolescent↗
PubMed1995

Reflection and critical incident analysis: ethical and moral implications of their use within nursing and midwifery education.

Despite the dearth of rigorous empirical investigation, reflection and reflective practice have become buzz words in nursing and midwifery education. Reflection and critical incident analysis may be tools which can facilitate the integration of theory and practice. It is proposed that in the absence of explicit and thorough preparation of lecturers and students, together with very careful curriculum planning, these activities may be counter-productive or even harmful. In the absence of structure, reflection and associated critical incident analysis may lead to student disaffection or, worse, the potential for actual psychological disturbance. Empirical studies on the use of identified models of reflection and critical incident analysis are urgently needed to assist nursing and midwifery lecturers and students to achieve predictable learning outcomes for this potentially valuable activity.

Attitude of Health Personnel↗
PubMed1996

Respecting the autonomy of cancer patients when talking with their families: qualitative analysis of semistructured interviews with patients.

OBJECTIVE: To discover cancer patients' views about disclosure of information to their family, their family's influence over the information given them, and their preferences for doctors' behaviour if they and their family disagree, as a complement to applied ethical theory. DESIGN: Semistructured interviews followed by qualitative content analysis. SETTING: Mainly urban British general practice. SUBJECTS: 30 patients in whom cancer, excluding basal and squamous cell skin carcinomas, was diagnosed 1-7 years earlier. RESULTS: All subjects wished doctors to respect their views rather than those of their family, should they differ. With their consent, subjects favoured close family receiving information about their illness, all but one mentioning advantage to their family. Without such consent, six unconditionally favoured disclosure of information to their family while seven unconditionally opposed disclosure. Seventeen participants restricted their approval for such disclosure to specific circumstances. Only two participants approved of their family influencing the information that they received about their illness; all but seven wished to receive full information, the exceptions relating to information about bad prognosis. CONCLUSIONS: Subjects favoured openness with their family but most rejected unconditional disclosure of information without their consent and their family influencing what information they would be given. They valued respect for their autonomy more highly than beneficence and considered that their own needs took priority over those of their family.

Attitude to Health↗
PubMed1998

The functions and limitations of trust in the provision of medical care.

Trust, the expectation that institutions and professionals will act in one's interests, contributes to the effectiveness of medical care. With the rapid privatization of medical care and the growth of managed care, trust may be diminished. Five important aspects of trust are examined: technical and interpersonal competence, physician agency, physician control, confidentiality, and open communication and disclosure. In each case, changing health care arrangements increase the risks of trusting and encourage regulatory interventions that substitute for some aspects of trust. With the increased size and centralization of health care plans, inevitable errors are attributed to health plans rather than to failures of individual judgment. Such generalized criticisms exacerbate distrust and encourage micromanagement of medical care processes.

Attitude to Health↗
PubMed1993

Self-disclosure of HIV infection to dentists and physicians.

We prospectively examined self-disclosure of HIV infection by 129 men and women to dentists and physicians. After an average of 2.3 years since initial HIV-positive notification and repeated individual counseling, only 53 percent of subjects had told their dentists of HIV infection compared to 89 percent who had told their physicians. This high rate of non-disclosure despite extensive counseling raises concern about effectiveness of education alone in promoting voluntary self-disclosure. Our findings further support recommended universal precautions.

Adolescent↗
PubMed1996

Clinical cancer research--some aspects on doctors' attitudes to informing participants.

With the aim to investigate the information policy of oncologists when recruiting patients for clinical trials a postal questionnaire was sent to 412 members of the Swedish Society of Oncology (response rate 74%). Depending on the situation, 20-40% of the doctors perceive that randomization before consent is an acceptable procedure. A majority of the physicians maintain that cancer patients are able to cope with adequate information but 45% of the doctors fear that the patients may withdraw from participating if they are adequately informed. It seems to be important to study the relationship between the quality of information given to participants and the motives they have for accepting or declining to participate.

Attitude↗