The current edition of the American Journal of Bioethics Empirical Bioethics is devoted to non-invasive prenatal screening. I was fortunate to have an article published in the issue and will present part of that research at this week’s American College of Medical Genetics & Genomics Annual Meeting.
Published
The special issue of the journal is titled:
Empirical Ethics and Perspectives in Non-Invasive Prenatal Genetic Testing.
Some of the other articles include:
- “Don’t want no risk and don’t want no problems”: public understandings of the risks and benefits of noninvasive prenatal testing in the United States, by Megan Allyse, Lauren Carter Sayres, Taylor Goodspeed, Marsha Michie & Mildred K. Cho,
- Printing unrealistic expectations: a closer look at newspaper representations of noninvasive prenatal testing, by Anjali R. Truitt and Michael H. V. Nguyen, and
- Hoping someday never comes: deferring ethical thinking about noninvasive prenatal testing, by Jessica Mozersky.
You can access their abstracts at the table of contents for the issue. All sound very interesting and I hope to cover each in the future.
Here’s the header to my contribution to the special issue:
There’s something very satisfying about seeing my work appearing like so many other journal articles that I’ve reviewed and covered here.
From the abstract:
Conclusions: The administration of prenatal testing continues to only provide one part of the information recommended by medical guidelines: the testing itself. Patients are not receiving the recommended pre- and post-test counseling and educational materials, nor are these being covered to the same extent as the cost of the NIPS test itself. Unless all of the information recommended by the medical guidelines is both provided and covered to the same extent as the testing itself, offering and covering the costs of NIPS is unjustified.
I came to this conclusion after conducting a systematic review of the research, encompassing 800+ unduplicated articles. The full abstract is available at this link. Full versions of the article are available for purchase, but a limited few may get a free copy (read on for that option).
Presenting at #ACMGMtg
Like last year, and the year before that, as well as in 2010, I’m lucky enough to have been accepted to present at ACMG’s annual conference. This year, the conference is in Salt Lake City, Utah. I look forward to providing a photo tour and summary as in previous years.
I will be presenting on the first half of my article’s focus: that studies have shown the current administration of prenatal testing does not respect a woman’s autonomy because expectant mothers are not provided the recommended resources to accompany a prenatal testing result. This has not improved with the advent of NIPS, but has worsened due to the overselling and misunderstanding of NIPS’ accuracy.
I will be giving a poster presentation on Friday from 10:30 – 12:00. My abstract number is 508. You can review the full abstract at this link. If attending, I hope you will stop by (and let me know you saw this post).
How you make this all possible
Since 2008, I have been presenting at the major medical conferences. But, unlike most all attendees at these conferences, until 2013, I was not affiliated with an organization that assisted with the cost of attending these conferences. In order to afford the airfare, hotel, and conference registration fees, I have been fortunate to have supporters that donate to fund my attendance at these conferences.
This support is what made my publication and presentation featured in this post possible.
In 2012, I presented at the International Society for Prenatal Diagnosis (ISPD) annual conference in Miami, Florida. There, I met several of the authors listed above, some of whom served as editors for the special issue. I saw them again at the 2013 ACMG conference in Phoenix, Arizona and we enjoyed a lunch together. Then, when the special issue was being assembled in 2014, because of these relationships, and their knowledge of my research and presentations, I was invited to submit an article for consideration.
So, efforts that began three years ago built and came to fruition with the article published in the current AJOB issue and what I will present on at the 2015 ACMG conference.
Thanks to all of those who supported my efforts in the past and continue to do so through donating to the National Center. This work continues because of your support.
Full version of article
As an author, I have been given a limited-access link that provides the full version of the article Unjustified to the first 50 viewers. If you would like to have access to the article, please contact me at mleach@downsyndromeprenataltesting.com and consider supporting the National Center.
Congratulations Mark!