Yousif Dawood, Maurice J B van den Hoff, Anita C J Ravelli, Bernadette S de Bakker, Eva Pajkrt
{"title":"父母接受胎儿组织捐赠。","authors":"Yousif Dawood, Maurice J B van den Hoff, Anita C J Ravelli, Bernadette S de Bakker, Eva Pajkrt","doi":"10.1001/jamanetworkopen.2024.44238","DOIUrl":null,"url":null,"abstract":"<p><strong>Importance: </strong>Human fetal tissue is essential for biomedical research, providing unparalleled insights into human development and disease.</p><p><strong>Objective: </strong>To assess changes in parental decisions to donate fetal tissue following termination of pregnancy after the introduction of the Dutch Fetal Biobank (DFB) and to identify factors associated with consent to donate.</p><p><strong>Design, setting, and participants: </strong>This cohort study collected data from all individuals assigned female at birth (hereafter referred to as participants) who underwent a termination of pregnancy at the Amsterdam University Medical Center from January 1, 2008, to December 31, 2022. No exclusion criteria were applied.</p><p><strong>Exposure: </strong>Introduction of the DFB on September 1, 2017, which offers the option to donate fetal tissue after pregnancy termination.</p><p><strong>Main outcome and measure: </strong>Rates of fetal tissue donation before and after DFB introduction and associations between patient characteristics (maternal age, race and ethnicity, socioeconomic status, gestational age, and reason for termination) and consent to donation were assessed using multivariable binary logistic regression modeling.</p><p><strong>Results: </strong>Of a total of 1272 participants (mean [SD] age, 33.0 [5.4] years), 576 (45.3%) were nulliparous. The mean (SD) gestational age at termination was 18 weeks 3 days (26 days), and reasons for termination were primarily because of structural defects (567 participants [44.6%]), with only a small portion (58 participants [4.6%]) terminating for social reasons (eg, unwanted or unplanned pregnancy). Fetal tissue donations increased from 1.2% (8 donations among 663 terminations) before the DFB introduction to 21.7% (132 donations among 609 terminations) after its introduction. This rise was primarily due to a shift from collective cremation to donation, while individual cremation or burial rates remained stable. The consent rate was 30.3% (132 of 436) for participants informed about the donation option. No significant demographic differences were found between participants who consented and those who did not, except for gestational age; consent rates decreased with advanced gestational age (odds ratio per week, 0.88; 95% CI, 0.83-0.94). Higher consent rates were observed for terminations due to social reasons (odds ratio, 3.56; 95% CI, 1.40-9.10).</p><p><strong>Conclusions and relevance: </strong>These findings suggest that a substantial proportion of individuals may be willing to donate fetal tissue for biomedical research after pregnancy termination. Integrating donation options in posttermination counseling respects patient autonomy and could ethically increase tissue availability for research. Expanding biobanks and fostering international collaboration is crucial for standardizing practices and ensuring equitable research benefits.</p>","PeriodicalId":14694,"journal":{"name":"JAMA Network Open","volume":"7 11","pages":"e2444238"},"PeriodicalIF":10.5000,"publicationDate":"2024-11-04","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11549655/pdf/","citationCount":"0","resultStr":"{\"title\":\"Parental Acceptance of Fetal Tissue Donation.\",\"authors\":\"Yousif Dawood, Maurice J B van den Hoff, Anita C J Ravelli, Bernadette S de Bakker, Eva Pajkrt\",\"doi\":\"10.1001/jamanetworkopen.2024.44238\",\"DOIUrl\":null,\"url\":null,\"abstract\":\"<p><strong>Importance: </strong>Human fetal tissue is essential for biomedical research, providing unparalleled insights into human development and disease.</p><p><strong>Objective: </strong>To assess changes in parental decisions to donate fetal tissue following termination of pregnancy after the introduction of the Dutch Fetal Biobank (DFB) and to identify factors associated with consent to donate.</p><p><strong>Design, setting, and participants: </strong>This cohort study collected data from all individuals assigned female at birth (hereafter referred to as participants) who underwent a termination of pregnancy at the Amsterdam University Medical Center from January 1, 2008, to December 31, 2022. No exclusion criteria were applied.</p><p><strong>Exposure: </strong>Introduction of the DFB on September 1, 2017, which offers the option to donate fetal tissue after pregnancy termination.</p><p><strong>Main outcome and measure: </strong>Rates of fetal tissue donation before and after DFB introduction and associations between patient characteristics (maternal age, race and ethnicity, socioeconomic status, gestational age, and reason for termination) and consent to donation were assessed using multivariable binary logistic regression modeling.</p><p><strong>Results: </strong>Of a total of 1272 participants (mean [SD] age, 33.0 [5.4] years), 576 (45.3%) were nulliparous. The mean (SD) gestational age at termination was 18 weeks 3 days (26 days), and reasons for termination were primarily because of structural defects (567 participants [44.6%]), with only a small portion (58 participants [4.6%]) terminating for social reasons (eg, unwanted or unplanned pregnancy). Fetal tissue donations increased from 1.2% (8 donations among 663 terminations) before the DFB introduction to 21.7% (132 donations among 609 terminations) after its introduction. This rise was primarily due to a shift from collective cremation to donation, while individual cremation or burial rates remained stable. The consent rate was 30.3% (132 of 436) for participants informed about the donation option. No significant demographic differences were found between participants who consented and those who did not, except for gestational age; consent rates decreased with advanced gestational age (odds ratio per week, 0.88; 95% CI, 0.83-0.94). Higher consent rates were observed for terminations due to social reasons (odds ratio, 3.56; 95% CI, 1.40-9.10).</p><p><strong>Conclusions and relevance: </strong>These findings suggest that a substantial proportion of individuals may be willing to donate fetal tissue for biomedical research after pregnancy termination. Integrating donation options in posttermination counseling respects patient autonomy and could ethically increase tissue availability for research. Expanding biobanks and fostering international collaboration is crucial for standardizing practices and ensuring equitable research benefits.</p>\",\"PeriodicalId\":14694,\"journal\":{\"name\":\"JAMA Network Open\",\"volume\":\"7 11\",\"pages\":\"e2444238\"},\"PeriodicalIF\":10.5000,\"publicationDate\":\"2024-11-04\",\"publicationTypes\":\"Journal Article\",\"fieldsOfStudy\":null,\"isOpenAccess\":false,\"openAccessPdf\":\"https://www.ncbi.nlm.nih.gov/pmc/articles/PMC11549655/pdf/\",\"citationCount\":\"0\",\"resultStr\":null,\"platform\":\"Semanticscholar\",\"paperid\":null,\"PeriodicalName\":\"JAMA Network Open\",\"FirstCategoryId\":\"3\",\"ListUrlMain\":\"https://doi.org/10.1001/jamanetworkopen.2024.44238\",\"RegionNum\":1,\"RegionCategory\":\"医学\",\"ArticlePicture\":[],\"TitleCN\":null,\"AbstractTextCN\":null,\"PMCID\":null,\"EPubDate\":\"\",\"PubModel\":\"\",\"JCR\":\"Q1\",\"JCRName\":\"MEDICINE, GENERAL & INTERNAL\",\"Score\":null,\"Total\":0}","platform":"Semanticscholar","paperid":null,"PeriodicalName":"JAMA Network Open","FirstCategoryId":"3","ListUrlMain":"https://doi.org/10.1001/jamanetworkopen.2024.44238","RegionNum":1,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q1","JCRName":"MEDICINE, GENERAL & INTERNAL","Score":null,"Total":0}
Importance: Human fetal tissue is essential for biomedical research, providing unparalleled insights into human development and disease.
Objective: To assess changes in parental decisions to donate fetal tissue following termination of pregnancy after the introduction of the Dutch Fetal Biobank (DFB) and to identify factors associated with consent to donate.
Design, setting, and participants: This cohort study collected data from all individuals assigned female at birth (hereafter referred to as participants) who underwent a termination of pregnancy at the Amsterdam University Medical Center from January 1, 2008, to December 31, 2022. No exclusion criteria were applied.
Exposure: Introduction of the DFB on September 1, 2017, which offers the option to donate fetal tissue after pregnancy termination.
Main outcome and measure: Rates of fetal tissue donation before and after DFB introduction and associations between patient characteristics (maternal age, race and ethnicity, socioeconomic status, gestational age, and reason for termination) and consent to donation were assessed using multivariable binary logistic regression modeling.
Results: Of a total of 1272 participants (mean [SD] age, 33.0 [5.4] years), 576 (45.3%) were nulliparous. The mean (SD) gestational age at termination was 18 weeks 3 days (26 days), and reasons for termination were primarily because of structural defects (567 participants [44.6%]), with only a small portion (58 participants [4.6%]) terminating for social reasons (eg, unwanted or unplanned pregnancy). Fetal tissue donations increased from 1.2% (8 donations among 663 terminations) before the DFB introduction to 21.7% (132 donations among 609 terminations) after its introduction. This rise was primarily due to a shift from collective cremation to donation, while individual cremation or burial rates remained stable. The consent rate was 30.3% (132 of 436) for participants informed about the donation option. No significant demographic differences were found between participants who consented and those who did not, except for gestational age; consent rates decreased with advanced gestational age (odds ratio per week, 0.88; 95% CI, 0.83-0.94). Higher consent rates were observed for terminations due to social reasons (odds ratio, 3.56; 95% CI, 1.40-9.10).
Conclusions and relevance: These findings suggest that a substantial proportion of individuals may be willing to donate fetal tissue for biomedical research after pregnancy termination. Integrating donation options in posttermination counseling respects patient autonomy and could ethically increase tissue availability for research. Expanding biobanks and fostering international collaboration is crucial for standardizing practices and ensuring equitable research benefits.
期刊介绍:
JAMA Network Open, a member of the esteemed JAMA Network, stands as an international, peer-reviewed, open-access general medical journal.The publication is dedicated to disseminating research across various health disciplines and countries, encompassing clinical care, innovation in health care, health policy, and global health.
JAMA Network Open caters to clinicians, investigators, and policymakers, providing a platform for valuable insights and advancements in the medical field. As part of the JAMA Network, a consortium of peer-reviewed general medical and specialty publications, JAMA Network Open contributes to the collective knowledge and understanding within the medical community.