14 CHIEF JUSTICE ABRAHAMSON: I'm moving along
15 because some of us have to leave to catch planes, and we
16 want to get to the reworked draft of convicted offender
17 database sample and public comment.
18 As I did yesterday, I will ask, since it's 3:30,
19 if there is any public comment that has to be made now, or
20 can it wait a few moments?
21 MS. CONLEY: It can wait.
22 CHIEF JUSTICE ABRAHAMSON: Fine. I appreciate
23 that.
24 There has been a redraft of the "therefores." Did
25 you change anything on the first page?
1 MR. ASPLEN: Changed a few matters pursuant to
2 Professor Kaye's suggestions.
3 In paragraph number 3 I have eliminated the word
4 "necessary" in sentence number 2 and the word "security" at
5 the end of "control."
6 Under the privacy concerns area, I have included
7 profile at 13 STR loci used in the CODIS system.
8 I have changed "DNA contain significantly." I
9 have included "more sensitive information."
10 Those are the only changes I've made there.
11 MR. SMITH: Is the last sentence a holdover from
12 the preceding draft?
13 MR. ASPLEN: The last sentence is a holdover from
14 the preceding draft. Professor Kaye suggested the
15 elimination of that. The only reason I kept it in was
16 because a couple of the Commissioners seemed to think that
17 it was a good idea to state those.
18 MR. SMITH: It can't be that Professor Kaye
19 thought it was a bad idea.
20 MR. ASPLEN: In fairness to him, I have his copy
21 of what he wrote.
22 MR. KAYE: I recall what I was thinking. There
23 were two thoughts. One is, and this is perhaps the more
24 significant one, that when you read these last two sentences
25 of the paragraph together, it creates a certain impression.
1 It says that whole sample DNA contains significantly more
2 sensitive information about an individual. The specter of
3 genetic behavioral research and behavioral profiling has
4 become a theoretical possibility.
5 It sounds like the sensitive information is
6 something relating to behavioral profiling, and it is much
7 more than that. It is genes that may be linked to cancer
8 and other matters that someone would not want revealed. I
9 thought the easiest way to deal with that is just to
10 eliminate the one sentence that gets more specific rather
11 than write a whole bunch of sentences.
12 The second point is, why single out that research
13 unless you think it's not a valid research to undertake?
14 It just seemed to open a can of worms that didn't
15 need to be made explicit.
16 Finally, it is a theoretical possibility that this
17 research will be undertaken regardless of any of these
18 samples. Behavioral research is done all the time by
19 behavioral geneticists.
20 So it doesn't quite get at the right point.
21 MR. CROW: I agree. Let's take it out.
22 CHIEF JUSTICE ABRAHAMSON: Which one are you
23 taking out, the last one?
24 MR. CROW: The last sentence of the first page.
25 CHIEF JUSTICE ABRAHAMSON: So it would end "while
1 the nature of digitalized DNA profile at 13 specific STR
2 loci used in the CODIS system present few opportunities for
3 manipulation beyond its intended uses, whole sample DNA
4 contain significantly more sensitive information about an
5 individual."
6 MR. CROW: That's good.
7 CHIEF JUSTICE ABRAHAMSON: Any other comments on
8 the first page?
9 All right. The second page.
10 "Therefore, public trust in a DNA database system
11 must be maintained by the continued analysis of and
12 attention to relevant privacy considerations. Given the
13 relatively early stage" --
14 MR. ASPLEN: I did not include it, but I would
15 include "stage of development."
16 CHIEF JUSTICE ABRAHAMSON: "Given the early stage
17 of development of the DNA database, engendering public trust
18 is particularly important. The issue of sample retention is
19 one which raises many of those privacy matters and as such
20 should be continually evaluated. The Commission recommends,
21 however, that in no later than five years a formal
22 evaluation of sample retention issues should be conducted by
23 a broad-based representative body. Sample retention even
24 with continued analysis of privacy issues should be
25 conditioned on the following:
1 "First, all states should adopt criminal penalties
2 for the misuse of DNA records and samples. Currently only"
3 -- blank -- "states have passed such legislation.
4 "Second, research on database records or samples
5 should be limited to that which is directly related to the
6 use of DNA evidence for identification purposes unless the
7 individual's whose DNA has been taken give their formal
8 consent."
9 MR. CROW: Let's take out the apostrophe.
10 CHIEF JUSTICE ABRAHAMSON: On "individual's,"
11 right.
12 Any comments?
13 MR. THOMA: Just one grammatical. "Sample
14 retention if recommended" within the last sentence of the
15 first paragraph. It is not necessarily so that sample
16 retention is going to be recommended by any such body.
17 MR. SMITH: In the "meanwhile."
18 MR. THOMA: Oh, you mean current sample retention.
19 That's fine. I withdraw that.
20 CHIEF JUSTICE ABRAHAMSON: You want to be put in
21 "meanwhile, sample retention even with continued analysis of
22 privacy issues should be conditioned on the following:"
23 MR. THOMA: I will withdraw that. Now I
24 understand.
25 CHIEF JUSTICE ABRAHAMSON: Any comments?
1 Phil.
2 DR. REILLY: To the extent that the dynamic of
3 informed consent would be taking place with somebody still
4 in prison, there is a strong line of thinking to suggest
5 that a consent process is not valid under those
6 circumstances, that you can never get truly informed consent
7 to research from a prison population. That is a
8 well-known body of literature within bioethics. I'm not
9 saying I support it; I'm just saying it's there.
10 Second and separate comment. Would it be
11 inappropriate -- I'm not sure myself -- to add to the last
12 paragraph a sentence that says something like this: Efforts
13 to use convicted felon databases in behavioral and genetics
14 research should not be undertaken at this time.
15 MR. CROW: I don't like it. I think this is well
16 enough alone. I agree with your sentiments, but I don't
17 think we should be saying it here.
18 MR. SMITH: It sounds a little bit, Phil, the
19 other way, doesn't it? It sounds like we're trying to hide
20 something.
21 MR. CROW: I'm afraid that too much talk about
22 many of these things just generates the opposite of what it
23 is intended to do.
24 DR. REILLY: Fair enough. I appreciate the
25 responses.
1 [Laughter.]
2 CHIEF JUSTICE ABRAHAMSON: Jan.
3 MS. BASHINSKI: We have the term "forensic" in
4 here. I don't know if it matters at all, but did you want
5 to add "forensic identification"? I think this is fine.
6 MR. CROW: There may be identification other than
7 forensic.
8 MS. BASHINSKI: I think it ought to be confined to
9 the forensic identification uses for which the samples were
10 collected.
11 MR. ASPLEN: That was part of the conversation
12 that we had before.
13 CHIEF JUSTICE ABRAHAMSON: We've added "forensic
14 identification."
15 Paul.
16 MR. FERRARA: Jan makes a good point. We talk
17 about DNA database system, but implicit in that is obviously
18 we are talking about forensics DNA.
19 MS. BASHINSKI: I think it makes it consistent.
20 Are we taking out that last clause on the last
21 page? Did we say informed consent is going to be taken out?
22 MR. FERRARA: Just the apostrophe "s" after
23 "individual."
24 MS. BASHINSKI: The clause is still in.
25 MR. ASPLEN: The clause is in.
1 CHIEF JUSTICE ABRAHAMSON: I think it's then "have
2 been given." "Individuals" is plural.
3 MR. ASPLEN: "Individuals have."
4 CHIEF JUSTICE ABRAHAMSON: Any other
5 communications on this?
6 I had suggested to Chris, and I don't know what
7 his response is or what yours is, that if the group is ready
8 to adopt this, I would suggest we might consider not
9 communicating this until after we communicate it to the DAB.
10 It's a matter of courtesy and politeness.
11 MR. SMITH: You can talk to yourself about it.
12 CHIEF JUSTICE ABRAHAMSON: Yes, I will, and Paul
13 too.
14 MR. CROW: Why don't we appoint the two of you to
15 bring this up at the DAB.
16 CHIEF JUSTICE ABRAHAMSON: We'll talk about this.
17 We are going to.
18 MR. SCHECK: Handle it however you want, but they
19 already know about it, right? It's all public.
20 CHIEF JUSTICE ABRAHAMSON: Yes, they will. It's a
21 matter of courtesy.
22 MR. ASPLEN: It's a matter of formal transmission
23 to the Attorney General at this time or not.
24 CHIEF JUSTICE ABRAHAMSON: I propose that if it's
25 adopted, we don't make formal communication. I always think
1 you can talk to people and listen. We may have something
2 that we haven't considered.
3 I would like a motion, Judge.
4 MR. REINSTEIN: I move that we adopt the wording
5 of the final draft where we came up with the changes at
6 lunchtime.
7 DR. REILLY: Second.
8 CHIEF JUSTICE ABRAHAMSON: There is a motion and a
9 second.
10 Those in favor will say aye.
11 [Chorus of ayes.]
12 CHIEF JUSTICE ABRAHAMSON: Any opposed will say
13 aye.
14 [No response.]
15 CHIEF JUSTICE ABRAHAMSON: That's how I get
16 unanimity.
17 [Laughter.]
18 CHIEF JUSTICE ABRAHAMSON: So this is adopted as
19 drafted.
20 Phil.
21 DR. REILLY: Is there going to be public comment
22 now?
23 CHIEF JUSTICE ABRAHAMSON: Yes. It is now open
24 again for public comment.
25 Sara.
1 MS. CONLEY: I'm Sara Conley. My public comment
2 is in two parts. The second one is much longer than the
3 first.
4 The first one. I am getting to commit my second
5 outrageous public act. The first one was committed in
6 Berlin in 1989. I made copies of the Federal Advisory
7 Committee Act for the members of the committee.
8 Each person is to get two pieces of paper. One is
9 the Federal Advisory Committee Act and the second is a
10 schedule that the Global Criminal Justice Information
11 Network gave out in their briefing books about the schedule
12 of their meetings and their working groups about six months
13 in advance, and the contact person for those working groups.
14 I just want to say one thing about the Federal
15 Advisory Committee Act. I read it. The word "public"
16 appears between 8 and 11 times; "interested person," 2; "all
17 interested persons," 1; "any persons," 1; "citizen" is zero.
18 I would like to refer you to section 32 on page 1
19 about definitions, and on section 10(b) and (c) on the
20 requirements of what should be made available to the public.
21 That concludes my first part.
22 The second part is rather extensive. If anyone
23 has to leave or you want to terminate me --
24 CHIEF JUSTICE ABRAHAMSON: I may terminate me.
25 Dr. Crow will take over.
1 MS. CONLEY: Okay.
2 Public interest is the issue in matters of DNA
3 samples and the length of retention of the samples, whether
4 compelled or not, whether in a forensic setting or a
5 research setting, and the attending privacy issues.
6 Within the last two years I have had several
7 experiences as a volunteer in research studies. The first
8 involved an extramural NIH funded study which is ongoing.
9 I signed two informed consents on my first visit.
10 One was for release of medical records and the second was
11 for the taking of a blood sample.
12 I put restrictions on the blood sample because of
13 the vague wording in the blood sample informed consent. The
14 restrictions I put on the sample was no genetic testing.
15 Those vague words were "genetic testings may be
16 done," but under questions from me, I would not be told
17 when, if ever, genetic tests would be done, would not say
18 which, if any, genetic tests would be done. If genetic
19 tests were done, I would not be told of the results.
20 When I said I would not put restrictions in the
21 blood sample if I would be given the opportunity to consent
22 to any genetic tests and be given the results, I put the
23 restrictions on the use of the blood sample as no genetics
24 to be conducted.
25 I only learned where the blood samples would be
1 stored when I asked.
2 I then asked for the research protocol, which was
3 sent to me in a few weeks. I was hoping to see more
4 specific information regarding genetic tests, but the
5 research protocol was no more informative than the informed
6 consent on this matter.
7 Therefore, I let the restrictions stand.
8 It was only upon receipt of the research protocol
9 that I learned it was a multicenter study.
10 At a subsequent visit, I then commented to one of
11 the study administrators that it was unfortunate as a former
12 genetic researcher I could not remove the restrictions on my
13 blood sample due to the absence of options to consider
14 giving consent it provided with prior knowledge to what
15 genes and/or alleles would be tested for, if any, and I
16 would be told the results.
17 The administrator then asked if I would
18 communicate my position to one of the medical doctors. I
19 agreed.
20 This is where it really gets interesting. She
21 ushered me into the doctor's office where she was sitting at
22 her desk working on her laptop. It was only when I was
23 leaving that I commented that I didn't mean to interrupt her
24 work, at which point she informed me she was taking notes on
25 my conversation.
1 After this experience and the receipt of the
2 research protocol, I then asked for the contract with the
3 pharmaceutical company where the blood samples were stored.
4 I told her that I should have been told this before my
5 talking with her, and I then requested a copy of the
6 contract.
7 I called her the next day and asked that I wanted
8 her notes on our conversation that "you deleted" from her
9 laptop. By that, I do not mean just push the delete button.
10 She told me she had interviewed a lot of research
11 volunteers and some other comments, all of which was
12 irrelevant.
13 As of this date, I have not received a copy of the
14 contract between the storage site, that is, the
15 pharmaceutical company, and the particular site where my
16 blood sample was taken.
17 The second study was an intramural NIH funded
18 study beginning within the last two or three months. On the
19 basis of my experience with the extramural multicenter
20 study, I requested a copy of the informed consent be faxed
21 to me before my first visit. Which was done, and it was
22 much more informative than the other blood sample informed
23 consent of the extramural NIH funded study.
24 In that it was for genetic tests. It mentioned
25 the disease conditions that they were interested in, but not
1 the specific genes and/or alleles they would be testing for.
2 At my visit I did request a copy of the research
3 protocol before I would sign an informed consent. Since
4 this study was for genetic tests for genetic diseases, as
5 one would expect, this genetic test research protocol was
6 very specific. So I made a list of questions and I asked to
7 speak to the principal investigator.
8 The principal investigator came in. I asked
9 several questions, one of which was, were the samples going
10 to be kept on site? And the answer was yes.
11 Referring back to the informed consent, which was
12 still unsigned by me, figuring that I was "among my kind,"
13 that is researchers in a research lab, I queried what was
14 his rationale for the language in the informed consent that
15 the results of the genetic tests would not be communicated
16 to me.
17 I received the usual "you won't be able to
18 interpret the results." He then asked me if I was familiar
19 with two of the three genes of interest. I was familiar
20 with one of the three.
21 I then commented that I felt this language was
22 unwarranted and my lack of familiarity with two of the three
23 genes as of that day did not mean that I would not be
24 familiar with the two or three genes a few months from now.
25 By the way, this was a small study with four
1 co-investigators, all of whom walked by one at a time during
2 our discussion.
3 The bottom line is I did sign the informed consent
4 with no restrictions. I did not ask how long the blood
5 samples would be retained only because they were not going
6 off site, and I assumed, perhaps naively, that I could
7 request a termination date later.
8 There are informed consent forms just for DNA
9 samples, and I think this Commission should develop informed
10 consent for DNA samples for forensic research or other
11 research studies.
12 Thank you.
13 MR. ASPLEN: Thank you, Sara.
14 MR. CROW: Anyone else from the public who has a
15 comment?
16 [No response.]
17 MR. CROW: It has been moved we adjourn. Is there
18 a second?
19 [Motion seconded.]
20 MR. CROW: It doesn't call for a vote.
21 MR. ASPLEN: As always, thank to the Commissioners
22 and to the DNA Commission staff.
23 [Whereupon at 3:50 p.m. the meeting was
24 adjourned.]

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