Pennsylvania Code Chapter 28 provides that newborns will be screened and have their blood collected for testing various diseases. These blood samples include DNA information and these can be stored indefinitely in the state database. The chapter has explicit provisions in § 28.5 which say the information must not be shared with unauthorized parties. However no consequences exist for when this information is “accidentally” lost. Nor are any limits placed on state use of this database for law enforcement purposes.
Of course this database is a disaster waiting to happen. A proper program, if it were actually designed for patient safety, would include double-blind samples. The same way they do AIDS testing. I have done AIDS testing, it works great.
Anyway, I used the PA Right to Know law to learn how many samples were added to the database and how many parents objected to the collection.
Here’s the data for 2017 as provided directly by the PA Department of Health:
- Number of patients for whom specimens were collected—125,872
- Number of patients for whom specimens were not collected—439
- Parental objection—108
- Newborn death prior to screening—245
- Unscreened for any other reason—86
I will refactor these numbers as follows:
- Live patients for whom specimens were collected—125,872
- Live patients for whom specimens were not collected—194
- Percentage of live patients for whom specimens were collected—99.85%
Supporting documentation follows
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