The nonmaleficent role of NIPT

At last week's ACMG Annual Clinical Meeting, I presented a poster titled "The Ethics of Non-Invasive Prenatal Testing." It turns out that the logic of my argument could very well be reflected in practice guidelines that are soon-to-be-released. I doubt the force of my abstract submitted last winter is to account for the change. But, it is a bit ironic that because NIPT will cause a test with risk to potentially have greater risk, NIPT has justified itself being inserted as a step before the test Continue Reading

Why is there prenatal testing for Down syndrome?

At my very first national medical conference, I received an answer to the question: why is there prenatal testing for Down syndrome? I have shared the response I received in many presentations. At last week’s ACMG conference, I learned of another reason. It struck me as profound. I wonder what you think about it.  Continue Reading

A Dream of a Brighter Future

Monday is Martin Luther King, Jr. Day. It seems fitting to observe on this holiday honoring the great civil rights leader what many have called the next civil rights movement. The new wave of prenatal testing advances has brought into focus what we mean by America's creed that all are created equal. Continue Reading

Is Prenatal Testing for Down Syndrome an “Essential Health Benefit”?

In a previous post, I posted the comment I submitted that is due on December 26. This post provides a fuller explanation of the proposed regulation and the reasons for my comment. I invite you to submit your own comment on the proposed regulation. Read on to find out why. With the election over, the Department for Health and Human Services (HHS) has issued regulations to fully implement the Patient Protection and Affordable Care Act (PPACA), aka “Obamacare.” The comment period for one of the Continue Reading

Questions RE: Down Syndrome Prenatal Testing Being an “Essential Health Benefit”

In a longer piece to be published later, I explain how the Department for Health & Human Services (HHS) has issued a proposed regulation where prenatal testing for Down syndrome will likely be covered as an essential health benefit (EHB) under the healthcare reform law, aka “Obamacare.” HHS is accepting comments on the proposed regulation through December 26, 2012. So, this Boxing Day, please celebrate with me by submitting a comment on the proposed regulation. Below is the text of the Continue Reading

Verinata’s Prenatal Testing Flow Chart: Unethical?

As I’ve mentioned before, on the home page there is a scroll of my twitter feed. Like this blog, I typically tweet about news related to Down syndrome and/or prenatal testing. But, sometimes Twitter’s 140-character limit is not enough to provide a thorough analysis of ethical issues. Verinata is a laboratory that developed its version of non-invasive prenatal testing (NIPT), which has the brand name "verifi." Featured on its website is the following decision-making flow chart for prenatal Continue Reading

“The Gradual Trap”–Informed Consent Process: Understanding

In the first post on the Informed Consent Process, I discussed the element of voluntariness. This week's post concerns the element of "understanding" and is prompted by the recent ACOG guidelines on NIPT and an article from this Spring that introduced the notion of "the gradual trap" in the context of prenatal testing. As a reminder, the new ACOG guidelines on NIPT recognize NIPT as a valid testing method for those women considered "high-risk." Many, if not most, of those women will meet that Continue Reading

The Informed Consent Process: Voluntariness

There are many ethical issues involved with prenatal testing for Down syndrome. I hope in time to address as many as possible. To start with, however, is the ethical concept that commentators have cited as making the offering of prenatal testing a moral obligation: informed consent. Informed consent has a rich history that developed in the United States through court decisions and was codified as an international norm in The Nuremberg Code. Out of respect for an individual's autonomy--the Continue Reading