A principled ethical approach to intersex paediatric surgeries.

Abstract:

BACKGROUND:Surgery for intersex infants should be delayed until individuals are able to decide for themselves, except where it is a medical necessity. In an ideal world, this single principle would suffice and such surgeries could be totally prohibited. Unfortunately, the world is not perfect, and, in some places, intersex neonates are at risk of being abandoned, mutilated or even killed. As long as intersex persons are at such high risk in some places, any ethical guidelines for intersex surgeries will need to take these extreme risks of harm into account. MAIN TEXT:I therefore argue for five basic principles that ought to inform ethics guidelines for surgical interventions in intersex children, specifically in contexts in which such children are at risk of significant harm. What I set out to come up with is a set of principles that do not completely prohibit surgery, but only allow it where a strong case can be made for its necessity, in the best interests of the child, and where there is some kind of oversight to prevent misuse. The first principle is that interventions as drastic as these surgeries should only be performed when there is strong evidence that they are beneficial and not harmful. The second principle is that in surgeries should normally only be performed in cases of true medical necessity. Principle three is that surgeries should normally be delayed until such time as the intersex person is mature enough to assent to treatment or decide against it. Principle four is that the conventional ethical requirements regarding truth telling apply equally to intersex children as to anyone else. The final principle is that where physicians or parents think that surgery is in the best interests of the child, the burden of proof lies with them. CONCLUSION:It is hoped that these principles might help medical teams and parents make better decisions about intersex surgeries on children, and they would make such surgeries very rare indeed, if they happen at all.

journal_name

BMC Med Ethics

journal_title

BMC medical ethics

authors

Behrens KG

doi

10.1186/s12910-020-00550-x

subject

Has Abstract

pub_date

2020-10-29 00:00:00

pages

108

issue

1

issn

1472-6939

pii

10.1186/s12910-020-00550-x

journal_volume

21

pub_type

杂志文章
  • Their view: difficulties and challenges of patients and physicians in cross-cultural encounters and a medical ethics perspective.

    abstract:BACKGROUND:In todays' super-diverse societies, communication and interaction in clinical encounters are increasingly shaped by linguistic, cultural, social and ethnic complexities. It is crucial to better understand the difficulties patients with migration background and healthcare professionals experience in their sha...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0311-4

    authors: Würth K,Langewitz W,Reiter-Theil S,Schuster S

    更新日期:2018-07-04 00:00:00

  • Patients' perceived purpose of clinical informed consent: Mill's individual autonomy model is preferred.

    abstract:BACKGROUND:Although informed consent is an integral part of clinical practice, its current doctrine remains mostly a matter of law and mainstream ethics rather than empirical research. There are scarce empirical data on patients' perceived purpose of informed consent, which may include administrative routine/courtesy g...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-15-2

    authors: Hammami MM,Al-Gaai EA,Al-Jawarneh Y,Amer H,Hammami MB,Eissa A,Qadire MA

    更新日期:2014-01-10 00:00:00

  • Public responses to the sharing and linkage of health data for research purposes: a systematic review and thematic synthesis of qualitative studies.

    abstract:BACKGROUND:The past 10 years have witnessed a significant growth in sharing of health data for secondary uses. Alongside this there has been growing interest in the public acceptability of data sharing and data linkage practices. Public acceptance is recognised as crucial for ensuring the legitimacy of current practice...

    journal_title:BMC medical ethics

    pub_type: 杂志文章,评审

    doi:10.1186/s12910-016-0153-x

    authors: Aitken M,de St Jorre J,Pagliari C,Jepson R,Cunningham-Burley S

    更新日期:2016-11-10 00:00:00

  • Is informed consent related to success in exercise and diet intervention as evaluated at 12 months? DR's EXTRA study.

    abstract:BACKGROUND:There is a permanent need to evaluate and develop the ethical quality of scientific research and to widen knowledge about the effects of ethical issues. Therefore we evaluated whether informed consent is related to implementation and success in a lifestyle intervention study with older research participants....

    journal_title:BMC medical ethics

    pub_type: 杂志文章,随机对照试验

    doi:10.1186/1472-6939-11-9

    authors: Länsimies-Antikainen H,Pietilä AM,Laitinen T,Kiviniemi V,Rauramaa R

    更新日期:2010-06-08 00:00:00

  • Ethical competence in DNR decisions -a qualitative study of Swedish physicians and nurses working in hematology and oncology care.

    abstract:BACKGROUND:DNR decisions are frequently made in oncology and hematology care and physicians and nurses may face related ethical dilemmas. Ethics is considered a basic competence in health care and can be understood as a capacity to handle a task that involves an ethical dilemma in an adequate, ethically responsible man...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0300-7

    authors: Pettersson M,Hedström M,Höglund AT

    更新日期:2018-06-19 00:00:00

  • Policy recommendations for addressing privacy challenges associated with cell-based research and interventions.

    abstract:BACKGROUND:The increased use of human biological material for cell-based research and clinical interventions poses risks to the privacy of patients and donors, including the possibility of re-identification of individuals from anonymized cell lines and associated genetic data. These risks will increase as technologies ...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-15-7

    authors: Ogbogu U,Burningham S,Ollenberger A,Calder K,Du L,El Emam K,Hyde-Lay R,Isasi R,Joly Y,Kerr I,Malin B,McDonald M,Penney S,Piat G,Roy DC,Sugarman J,Vercauteren S,Verhenneman G,West L,Caulfield T

    更新日期:2014-02-03 00:00:00

  • An effective multisource informed consent procedure for research and clinical practice: an observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank.

    abstract:BACKGROUND:Efforts to improve patients' understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applicat...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-14-30

    authors: Cervo S,Rovina J,Talamini R,Perin T,Canzonieri V,De Paoli P,Steffan A

    更新日期:2013-07-30 00:00:00

  • The use of empirical research in bioethics: a survey of researchers in twelve European countries.

    abstract:BACKGROUND:The use of empirical research methods in bioethics has been increasing in the last decades. It has resulted in discussions about the 'empirical turn of bioethics' and raised questions related to the value of empirical work for this field, methodological questions about its quality and rigor, and how this int...

    journal_title:BMC medical ethics

    pub_type: 杂志文章,多中心研究

    doi:10.1186/s12910-017-0239-0

    authors: Wangmo T,Provoost V

    更新日期:2017-12-22 00:00:00

  • An analysis of common ethical justifications for compassionate use programs for experimental drugs.

    abstract:BACKGROUND:When a new intervention or drug is developed, this has to pass through various phases of clinical testing before it achieves market approval, which can take many years. This raises an issue for drugs which could benefit terminally ill patients. These patients might set their hopes on the experimental drug bu...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-016-0145-x

    authors: Raus K

    更新日期:2016-10-18 00:00:00

  • Actual implementation of sick children's rights in Italian pediatric units: a descriptive study based on nurses' perceptions.

    abstract:BACKGROUND:Several charters of rights have been issued in Europe to solemnly proclaim the rights of children during their hospital stay. However, notwithstanding such general declarations, the actual implementation of hospitalized children's rights is unclear. The purpose of this study was to understand to which extent...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-015-0021-0

    authors: Bisogni S,Aringhieri C,McGreevy K,Olivini N,Lopez JR,Ciofi D,Merlo AM,Mariotti P,Festini F

    更新日期:2015-05-13 00:00:00

  • The relationship between the perception of open disclosure of patient safety incidents, perception of patient safety culture, and ethical awareness in nurses.

    abstract:BACKGROUND:Scientific advances have resulted in more complex medical systems, which in turn have led to an increase in the number of patient safety incidents (PSIs). In this environment, the importance of honest disclosure of PSIs is rising, which highlight the need to settle a reliable system. This study aimed to inve...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-020-00546-7

    authors: Kim Y,Lee E

    更新日期:2020-10-27 00:00:00

  • Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.

    abstract:BACKGROUND:Appropriate information and consent has been one of the most intensely discussed topics within the context of biobank research. In parallel to the normative debate, many socio-empirical studies have been conducted to gather experiences, preferences and views of patients, healthy research participants and fur...

    journal_title:BMC medical ethics

    pub_type: 杂志文章,评审

    doi:10.1186/s12910-015-0053-5

    authors: D'Abramo F,Schildmann J,Vollmann J

    更新日期:2015-09-09 00:00:00

  • A framework for the ethical assessment of chimeric animal research involving human neural tissue.

    abstract:BACKGROUND:Animal models of human diseases are often used in biomedical research in place of human subjects. However, results obtained by animal models may fail to hold true for humans. One way of addressing this problem is to make animal models more similar to humans by placing human tissue into animal models, renderi...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-019-0345-2

    authors: Porsdam Mann S,Sun R,Hermerén G

    更新日期:2019-01-25 00:00:00

  • Complexity of consenting for medical termination of pregnancy: prospective and longitudinal study in Paris.

    abstract:BACKGROUND:We analyzed the patients' perception of prenatal diagnosis of fetal cardiac pathology, and the reasons for choosing to continue with pregnancy despite being eligible to receive a medical termination of pregnancy. We also identified the challenges, the motives interfering in decision-making, and the consequen...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0270-9

    authors: Abi Tayeh G,Jouannic JM,Mansour F,Kesrouani A,Attieh E

    更新日期:2018-05-02 00:00:00

  • Technology assessment and resource allocation for predictive genetic testing: a study of the perspectives of Canadian genetic health care providers.

    abstract:BACKGROUND:With a growing number of genetic tests becoming available to the health and consumer markets, genetic health care providers in Canada are faced with the challenge of developing robust decision rules or guidelines to allocate a finite number of public resources. The objective of this study was to gain Canadia...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-10-6

    authors: Adair A,Hyde-Lay R,Einsiedel E,Caulfield T

    更新日期:2009-06-18 00:00:00

  • Promoting advance planning for health care and research among older adults: a randomized controlled trial.

    abstract:BACKGROUND:Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research...

    journal_title:BMC medical ethics

    pub_type: 杂志文章,随机对照试验

    doi:10.1186/1472-6939-13-1

    authors: Bravo G,Arcand M,Blanchette D,Boire-Lavigne AM,Dubois MF,Guay M,Hottin P,Lane J,Lauzon J,Bellemare S

    更新日期:2012-01-05 00:00:00

  • Leaving patients to their own devices? Smart technology, safety and therapeutic relationships.

    abstract:BACKGROUND:This debate article explores how smart technologies may create a double-edged sword for patient safety and effective therapeutic relationships. Increasing utilization of health monitoring devices by patients will likely become an important aspect of self-care and preventive medicine. It may also help to enha...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0255-8

    authors: Ho A,Quick O

    更新日期:2018-03-06 00:00:00

  • Identification of ethics committees based on authors' disclosures: cross-sectional study of articles published in the European Journal of Anaesthesiology and a survey of ethics committees.

    abstract:BACKGROUND:Since 2010, the European Journal of Anaesthesiology has required the reporting of five items concerning ethical approval in articles describing human research: ethics committee's name and address, chairperson's name, study's protocol number and approval date. We aimed to assess whether this requirement has h...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0289-y

    authors: Zoccatelli D,Tramèr MR,Elia N

    更新日期:2018-06-08 00:00:00

  • Will my patients get their residence permit? A critical analysis of the ethical dilemmas involved in writing medical certificates for residence permits in France.

    abstract:BACKGROUND:France has long been a country of immigration and in some respects may be seen to have a generous policy with respect to asylum seekers and access to health care for migrants. The French state notably provides healthcare access for undocumented migrants, through state medical aid and since 1998 has had a hum...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-020-00500-7

    authors: Cailhol J,Lebon MC,Sherlaw W

    更新日期:2020-07-13 00:00:00

  • The Picture Talk Project: Starting a Conversation with Community Leaders on Research with Remote Aboriginal Communities of Australia.

    abstract:BACKGROUND:Researchers are required to seek consent from Indigenous communities prior to conducting research but there is inadequate information about how Indigenous people understand and become fully engaged with this consent process. Few studies evaluate the preference or understanding of the consent process for rese...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0191-z

    authors: Fitzpatrick EFM,Macdonald G,Martiniuk ALC,D'Antoine H,Oscar J,Carter M,Lawford T,Elliott EJ

    更新日期:2017-05-11 00:00:00

  • Ethics of health research with prisoners in Canada.

    abstract:BACKGROUND:Despite the growing recognition for the need to improve the health of prisoners in Canada and the need for health research, there has been little discussion of the ethical issues with regards to health research with prisoners in Canada. The purpose of this paper is to encourage a national conversation about ...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0189-6

    authors: Silva DS,Matheson FI,Lavery JV

    更新日期:2017-04-27 00:00:00

  • What makes public health studies ethical? Dissolving the boundary between research and practice.

    abstract:BACKGROUND:The generation of evidence is integral to the work of public health and health service providers. Traditionally, ethics has been addressed differently in research projects, compared with other forms of evidence generation, such as quality improvement, program evaluation, and surveillance, with review of non-...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-15-61

    authors: Willison DJ,Ondrusek N,Dawson A,Emerson C,Ferris LE,Saginur R,Sampson H,Upshur R

    更新日期:2014-08-08 00:00:00

  • Voluntary participation and comprehension of informed consent in a genetic epidemiological study of breast cancer in Nigeria.

    abstract:BACKGROUND:Studies on informed consent to medical research conducted in low or middle-income settings have increased, including empirical investigations of consent to genetic research. We investigated voluntary participation and comprehension of informed consent among women involved in a genetic epidemiological study o...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-15-38

    authors: Marshall PA,Adebamowo CA,Adeyemo AA,Ogundiran TO,Strenski T,Zhou J,Rotimi CN

    更新日期:2014-05-13 00:00:00

  • How participatory is parental consent in low literacy rural settings in low income countries? Lessons learned from a community based study of infants in South India.

    abstract:BACKGROUND:A requisite for ethical human subjects research is that participation should be informed and voluntary. Participation during the informed consent process by way of asking questions is an indicator of the extent to which consent is informed. AIMS:The aims of this study were to assess the extent to which pare...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-12-3

    authors: Rajaraman D,Jesuraj N,Geiter L,Bennett S,Grewal HM,Vaz M,TB Trials Study Group.

    更新日期:2011-02-15 00:00:00

  • An interprofessional cohort analysis of student interest in medical ethics education: a survey-based quantitative study.

    abstract:BACKGROUND:There is continued need for enhanced medical ethics education across the United States. In an effort to guide medical ethics education reform, we report the first interprofessional survey of a cohort of graduate medical, nursing and allied health professional students that examined perceived student need for...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-020-00468-4

    authors: DeFoor MT,Chung Y,Zadinsky JK,Dowling J,Sams RW 2nd

    更新日期:2020-04-08 00:00:00

  • Patients as consumers of health care in South Africa: the ethical and legal implications.

    abstract:BACKGROUND:South Africa currently has a pluralistic health care system with separate public and private sectors. It is, however, moving towards a socialised model with the introduction of National Health Insurance. The South African legislative environment has changed recently with the promulgation of the Consumer Prot...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/1472-6939-14-15

    authors: Rowe K,Moodley K

    更新日期:2013-03-21 00:00:00

  • Structural racism in precision medicine: leaving no one behind.

    abstract:BACKGROUND:Precision medicine (PM) is an emerging approach to individualized care. It aims to help physicians better comprehend and predict the needs of their patients while effectively adopting in a timely manner the most suitable treatment by promoting the sharing of health data and the implementation of learning hea...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-020-0457-8

    authors: Geneviève LD,Martani A,Shaw D,Elger BS,Wangmo T

    更新日期:2020-02-19 00:00:00

  • Developing an ethics support tool for dealing with dilemmas around client autonomy based on moral case deliberations.

    abstract:BACKGROUND:Moral Case Deliberations (MCDs) are reflective dialogues with a group of participants on their own moral dilemmas. Although MCD is successful as clinical ethics support (CES), it also has limitations. 1. Lessons learned from individual MCDs are not shared in order to be used in other contexts 2. Moral learni...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-018-0335-9

    authors: Hartman LA,Metselaar S,Molewijk AC,Edelbroek HM,Widdershoven GAM

    更新日期:2018-12-22 00:00:00

  • Patient-targeted Googling and social media: a cross-sectional study of senior medical students.

    abstract:BACKGROUND:Social media and Internet technologies present several emerging and ill-explored issues for a modern healthcare workforce. One issue is patient-targeted Googling (PTG), which involves a healthcare professional using a social networking site (SNS) or publicly available search engine to find patient informatio...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-017-0230-9

    authors: Chester AN,Walthert SE,Gallagher SJ,Anderson LC,Stitely ML

    更新日期:2017-12-04 00:00:00

  • Confidentiality breaches in clinical practice: what happens in hospitals?

    abstract:BACKGROUND:Respect for confidentiality is important to safeguard the well-being of patients and ensure the confidence of society in the doctor-patient relationship. The aim of our study is to examine real situations in which there has been a breach of confidentiality, by means of direct observation in clinical practice...

    journal_title:BMC medical ethics

    pub_type: 杂志文章

    doi:10.1186/s12910-016-0136-y

    authors: Beltran-Aroca CM,Girela-Lopez E,Collazo-Chao E,Montero-Pérez-Barquero M,Muñoz-Villanueva MC

    更新日期:2016-09-02 00:00:00