142nd APHA Annual Meeting and Exposition

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Prenatal Genetic Testing for Autism: Abortion Decision-making among Taiwanese Parents of Children with Autism Spectrum Disorders

142nd APHA Annual Meeting and Exposition (November 15 - November 19, 2014): http://www.apha.org/events-and-meetings/annual
Monday, November 17, 2014

Shixi Zhao, B.S. , Department of Health and Kinesiology, Texas A&M University, College Station, TX
Tse-Yang Huang, Ph.D. , Department of Special Education, National HsinChu University of Education, HsinChu, Taiwan
Eunju Jung, Ph.D. , Department of Health and Kinsiology, Texas A&M University, College Station, TX
Jia Ye, B.S. , Department of Health and Kinesiology, Texas A&M University, College Station, TX
Lei Xu, Ph.D. , Department of Health Education and Promotion, East Carolina University, Greenville, NC
Yu-Yu Wu, M.D. , Department of Psychiatry, Chang Gung University College of Medicine, Taoyuan, Taiwan
Daniel Fu-Chang Tsai, M.D., Ph.D. , Department of Medical Education and Bioethics, National Taiwan University College of Medicine, Taipei, Taiwan
Divya Talwar, M.P.H. , Department of Health and Kinesiology, Texas A&M University, College Station, TX
Lei-Shih Chen, Ph.D., P.T., C.H.E.S. , Department of Health and Kinesiology, Texas A&M University, College Station, TX
Background: Taiwan has witnessed increased prevalence of Autism Spectrum Disorders (ASD) in recent decades. Though, prenatal genetic testing (PGT) for autism is not currently available in Taiwan, its implementation is anticipated in the future. Thus, to address the ethical, legal and social issues (ELSI), this first-of-its-kind study examined abortion decision-making regarding PGT for autism among parents of children with ASD in Taiwan.

Methods:  We surveyed 450 parents with at least one child having ASD in Taiwan. The survey included both open-ended and close-ended questions regarding parental attitudes toward PGT for autism. Both qualitative and quantitative data were analyzed. 

Results: Our analysis showed that almost half of the participants (48%) would give birth to affected children with ASD and the reasons were: 1) Possibility that the child doesn’t develop ASD after birth and 2) indications of life in a fetus. Less than 1% of the participants would use this information to prepare for childbirth, and early diagnosis, intervention and treatment. The other half of participants (52%), which intended to terminate the affected pregnancies, reasoned 1) reluctance to have another child with ASD, 2) perception of ASD as a severe disease, and 3) insufficient resources to raise another child with ASD.

Conclusions: From our findings, about half of our sample intended to abort the fetuses that might have ASD. These results can be utilized to develop future guidelines for genetic counseling and education for PGT for autism and help clinicians to communicate the benefits and limitations of PGT for informed decision-making.

Learning Areas:

Conduct evaluation related to programs, research, and other areas of practice
Diversity and culture
Ethics, professional and legal requirements
Public health or related education
Public health or related laws, regulations, standards, or guidelines

Learning Objectives:
Describe the abortion decision-making among parents of children with ASD in Taiwan. Discuss future directions of practices regarding PGT for autism in Taiwan.

Keyword(s): Abortion, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am in charge of the Taiwan ASD project, and working on collecting, checking and analyzing the data. In the meanwhile, I have been working in the field of public health genomics as the focus of my master's studies.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.