Thursday, July 16, 2015, an oft-stated, but rarely occurring, meeting will be held. If you can get there, I hope to see you in attendance.
In this pluralistic, post-modern, secular society, it is a challenge to arrive at what is the “right” way to do something. When thorny ethical issues are posed, the common prescription for arriving at the “right” way to address them is by calling for a meeting of all the stakeholders. Everyone’s perspective then can be shared and considered. Through this process, some consensus can be reached, and that then becomes the “right” way to address the ethical issue.
Prenatal genetic testing has posed this thorny ethical issue from its inception: since no prenatal treatment is available for the condition, and many women will choose to terminate upon receiving a prenatal genetic diagnosis, what, then, is the “right” way for administering prenatal testing. Being a thorny ethical issue, the same prescription is often called for by commentators: assemble the stakeholders and reach consensus.
And, yet: it. rarely. ever. happens.
In just the past few months, two professional medical organizations have issued updated guidelines on how noninvasive prenatal screening (NIPS) should be administered. The first, the International Society of Prenatal Diagnosis (ISPD), arrived at its statement by a committee the super-majority of which was comprised of members with declared conflicts of interest for receiving funds or being employed by the NIPS laboratories themselves. The second, the American Congress of Obstetricians & Gynecologists (ACOG), issued its updated statement from a committee and through a process largely unknown to lay people.
Which is why next week’s symposium is so important.
Click this link to look over the agenda and consider the speakers and topics. You will see that the symposium does actually convene the stakeholders in prenatal genetic testing: medical professionals, bioethicists, and patient and disability rights advocates. They will be speaking on the clinical issues associated with NIPS, patient experiences with NIPS, the perspective of those with the tested-for conditions, and what the future holds.
This is exactly the type of meeting called for by bioethical analysis of dealing with the thorny issues posed by prenatal genetic testing.
The symposium has been organized by the Prenatal Information Research Consortium (PIRC), a non-profit collaboration of researchers. (I became a member of PIRC earlier this year after attending and presenting at the American College of Medical Genetics (ACMG) annual conference).
The symposium is being held in conjunction with ISPD’s annual meeting and ISPD’s President will be speaking at the symposium. While not included in the drafting of ISPD’s recommendations, ISPD should be given credit for recognizing the importance of the symposium, promoting it on the homepage for its conference, and for having its President present.
Similarly, while the amount of input ACOG received from all stakeholders is unknown, it did link to patient and provider resources that were developed based on that stakeholder input. (You can read more about this significant professional guideline at my post at the PIRC’s blog). Notably, ACOG’s latest recommendations link to statements that share Lettercase’s Understanding a Down Syndrome Diagnosis, which was developed with the input of just this type of meeting of stakeholders, the Down Syndrome Consensus Group.
If you can make it to DC next Thursday, I highly encourage you to do so. It’s one of those things that the odds of it happening again are tied to the level of interest shown: the more who attend, the more likely these type of important meetings will happen. If you attend, you will benefit by learning from other’s perspectives, and, if you are so bold as to ask a question or share a comment, they will benefit from learning from your perspective, too.
I hope to see you in DC next week.
The Stakeholder Perspective on Noninvasive Prenatal Genetic Screening Symposium will take place at the Carnegie Library at Mount Vernon Square, 801 K Street, NW, Washington, DC 20001. You can register at this link, but do so today as space is limited to the first 175 registrants. Discounts may apply.
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