Ethical Concerns in the Implementation of DNA Sequencing-Based Noninvasive Prenatal Testing for Fetal Aneuploidy Among Obstetric Professionals in Hong Kong

Abstract

Background: Cell-free fetal DNA-sequencing-based noninvasive prenatal testing (NIPT) for fetal aneuploidy was introduced in late 2011 in Hong Kong. While the clinical benefits of NIPT as an easy, accurate, and procedurally risk-free test at an early gestational stage are recognized, little is known about its ethical implications in antenatal care. This study aimed to assess obstetric professionals’ views of NIPT. Methods: Surveys containing closed-ended questions about knowledge and attitudes toward NIPT and views on selected ethical issues associated with it were distributed to obstetricians, nurses, and midwives practicing in both the public and private sectors in Hong Kong between October 2013 and January 2014. Results: Of the 327 respondents, 123 (38%) were NIPT providers, 138 (42%) were knowledgeable about the test but did not provide it (“nonproviders”), and 20% (66/327) had no knowledge of NIPT (“NIPT unaware”). Forty-three percent of NIPT providers and nonproviders (111/261) regarded NIPT as a primary screening test, and 27% regarded it as diagnostic test. NIPT providers were more likely than nonproviders to obtain NIPT information from university and hospital websites (p = .03), scientific reports (p < .001), or pregnant women's media (p = 001). The greatest ethical concerns among respondents were patients undertaking multiple screening tests, unequal access due to high cost, and patients’ inadequate knowledge. The social implications of possible increased rates of pregnancy terminations and increased discrimination of individuals with Down syndrome were found to be the ethical issues of least concern, but nonproviders regarded these issues as raising more ethical concerns than providers. Conclusion: Consistent with earlier research, this study found that health care providers who are familiar with NIPT see this technology as having some clinical utility while raising a number of ethical issues. Educational and informational materials should be developed to support those who deliver this service.

Keywords:

• noninvasive prenatal testing
• fetal aneuploidy
• Down syndrome screening
• survey
• Hong Kong

ACKNOWLEDGMENTS

We thank the midwives who helped to recruit the participants. We especially thank Y. M. Dennis Lo and Rossa W. K. Chiu for their valuable contributions to the study design and in the interpretation of the study findings. We also thank Nina Hallowell for her critical comments and editing of the article.

AUTHOR CONTRIBUTIONS

H. Yi conceived the study topic and designed the study and survey questionnaire with O. M. Y. Ngan and D. Sahota. O. M. Y. Ngan conducted data collection and analysis with H. Yi. S. Griffiths, and D. Sahota provided data interpretation. H. Yi wrote the first draft. All contributed to the writing of the article.

CONFLICTS OF INTEREST

None reported.

ETHICAL APPROVAL

This study was approved by the Chinese University of Hong Kong–Hospital Authority New Territories East Cluster Clinical Research Ethics Committee and the Survey and Behavioral Research Ethics Committee.

Funding

The study was supported by the University Grants Committee (UGC) of the Government of the Hong Kong Special Administrative Region, China, under the Areas of Excellence Scheme (AoE/M-04/06; PI Y. M. Dennis Lo). The study sponsor had no role in the study design; in the collection, analysis, and interpretation of the data; or in the writing of the article and decision to submit the article for publication.

Notes

1 . For further review of the evidence, see, e.g., Twiss et al. (2014) and Gil et al. (2014).

2 . PPV is the likelihood that a positive test is a true positive result.