1 00:00:00,870 --> 00:00:02,160 [Instructor] All right, so here I'm going 2 00:00:02,160 --> 00:00:04,830 to talk through some more specific slides on GINA 3 00:00:04,830 --> 00:00:06,000 for health professionals, 4 00:00:06,000 --> 00:00:07,751 and this was developed 5 00:00:07,751 --> 00:00:10,530 through the Genetics & Public Policy Center 6 00:00:10,530 --> 00:00:14,490 and the NCHPEG and Genetic Alliance. 7 00:00:14,490 --> 00:00:16,140 I think these are some great examples 8 00:00:16,140 --> 00:00:18,000 that can hopefully be helpful 9 00:00:18,000 --> 00:00:21,780 and understanding practical guide to GINA. 10 00:00:21,780 --> 00:00:22,860 So consider the following. 11 00:00:22,860 --> 00:00:24,330 A woman who has a family history 12 00:00:24,330 --> 00:00:26,910 of breast cancer is interested in genetic testing. 13 00:00:26,910 --> 00:00:28,470 She asks her healthcare provider 14 00:00:28,470 --> 00:00:30,480 whether a positive test result can be used 15 00:00:30,480 --> 00:00:35,130 to deny her health insurance, life insurance, or employment. 16 00:00:35,130 --> 00:00:37,170 These practices are examples of genetic, 17 00:00:37,170 --> 00:00:38,610 potential genetic discrimination. 18 00:00:38,610 --> 00:00:40,140 That's what she's concerned about, 19 00:00:40,140 --> 00:00:41,970 and we do have law in place 20 00:00:41,970 --> 00:00:44,523 to protect some of what she's asking. 21 00:00:45,900 --> 00:00:49,200 So this was signed into law on May 21st, 2008, 22 00:00:49,200 --> 00:00:51,000 by President George W. Bush. 23 00:00:51,000 --> 00:00:55,560 The law is in effect since November of 2009. 24 00:00:55,560 --> 00:00:57,360 So again, when we compare GINA and HIPAA, 25 00:00:57,360 --> 00:00:59,580 the GINA is protects against the use 26 00:00:59,580 --> 00:01:02,220 of genetic information to discriminate in health insurance 27 00:01:02,220 --> 00:01:04,530 and employment while HIPAA protects the privacy 28 00:01:04,530 --> 00:01:06,390 of health related information. 29 00:01:06,390 --> 00:01:07,500 So what does GINA do? 30 00:01:07,500 --> 00:01:08,820 Health insurers that prohibits 31 00:01:08,820 --> 00:01:11,700 using a person's genetic information in setting eligibility 32 00:01:11,700 --> 00:01:13,650 or premium or contribution amounts, 33 00:01:13,650 --> 00:01:15,690 prohibits health insurers from requesting 34 00:01:15,690 --> 00:01:18,300 or requiring that a person undergo a genetic test, 35 00:01:18,300 --> 00:01:20,610 and life insurers at this time, 36 00:01:20,610 --> 00:01:22,350 GINA does not affect life, disability, 37 00:01:22,350 --> 00:01:23,820 or long-term care insurance. 38 00:01:23,820 --> 00:01:26,550 GINA does not affect the practice of medicine. 39 00:01:26,550 --> 00:01:29,070 It affects health insurers and employers. 40 00:01:29,070 --> 00:01:32,730 Of course, though where health insurers are affected, 41 00:01:32,730 --> 00:01:36,569 that also can of course affect healthcare, 42 00:01:36,569 --> 00:01:39,690 but not directly through GINA. 43 00:01:39,690 --> 00:01:40,523 For employers, 44 00:01:40,523 --> 00:01:42,540 it prohibits the use of a person's genetic information 45 00:01:42,540 --> 00:01:44,430 in decisions such as hiring, firing, 46 00:01:44,430 --> 00:01:46,020 job assignments and promotions, 47 00:01:46,020 --> 00:01:47,820 and prohibits requesting, requiring, 48 00:01:47,820 --> 00:01:49,350 or purchasing genetic information 49 00:01:49,350 --> 00:01:52,830 about an individual employee or family member. 50 00:01:52,830 --> 00:01:53,880 So in this presentation, 51 00:01:53,880 --> 00:01:56,370 we're going to talk about four case studies. 52 00:01:56,370 --> 00:01:58,140 GINA and family history, 53 00:01:58,140 --> 00:01:59,970 GINA and genetic testing, 54 00:01:59,970 --> 00:02:01,920 GINA, manifest disease, and predisposition, 55 00:02:01,920 --> 00:02:03,330 and GINA and prenatal issues. 56 00:02:03,330 --> 00:02:05,070 So starting first with the first case, 57 00:02:05,070 --> 00:02:06,690 GINA and family history, 58 00:02:06,690 --> 00:02:09,150 a woman and her six-year-old son, Sam, 59 00:02:09,150 --> 00:02:10,740 present for routine care. 60 00:02:10,740 --> 00:02:15,032 Sam is known to have neurofibromatosis type 1, or NF1. 61 00:02:15,032 --> 00:02:18,900 There's Sam there, and his parents. 62 00:02:18,900 --> 00:02:21,150 Provider takes a three generation pedigree 63 00:02:21,150 --> 00:02:23,250 shown at the right and here we go. 64 00:02:23,250 --> 00:02:24,540 Here's the rest of it. 65 00:02:24,540 --> 00:02:27,540 So no one else has been clinically diagnosed 66 00:02:27,540 --> 00:02:29,329 with neurofibromatosis. 67 00:02:29,329 --> 00:02:33,129 As you probably recall, what is neurofibromatosis? 68 00:02:33,129 --> 00:02:35,820 It's a autosomal dominant condition. 69 00:02:35,820 --> 00:02:39,330 There's a 50% chance to pass on changed NF1 gene 70 00:02:39,330 --> 00:02:41,820 to offspring because it's autosomal dominant. 71 00:02:41,820 --> 00:02:43,950 Multiple benign tumors are the result 72 00:02:43,950 --> 00:02:46,500 and can sometimes affect the brain and spinal cord. 73 00:02:47,520 --> 00:02:51,630 Who in the family is at risk for neurofibromatosis type 1? 74 00:02:51,630 --> 00:02:52,499 Well, if we look at it, 75 00:02:52,499 --> 00:02:55,410 certainly since this is a dominant condition, 76 00:02:55,410 --> 00:02:56,640 autosomal dominant condition, 77 00:02:56,640 --> 00:02:58,410 it could be either of the parents 78 00:02:58,410 --> 00:03:01,038 may also have the condition, 79 00:03:01,038 --> 00:03:04,890 and if that's the case, then whichever parent, 80 00:03:04,890 --> 00:03:06,390 if one of these parents does have it, 81 00:03:06,390 --> 00:03:07,738 if it wasn't seen, for example, 82 00:03:07,738 --> 00:03:12,738 a de novo mutation that resulted in this particular, 83 00:03:15,570 --> 00:03:16,830 in this particular child, 84 00:03:16,830 --> 00:03:18,090 if it was actually something 85 00:03:18,090 --> 00:03:20,456 that was present in any part of the family, 86 00:03:20,456 --> 00:03:23,640 there would be concerns about that whole side of the family. 87 00:03:23,640 --> 00:03:26,340 So if it came back that, say for example, 88 00:03:26,340 --> 00:03:27,600 the parents were tested, 89 00:03:27,600 --> 00:03:30,990 it came back that the mother had a neurofibromatosis 90 00:03:30,990 --> 00:03:33,660 but it wasn't say, fully penetrant for her, 91 00:03:33,660 --> 00:03:36,060 then the other family members on her side 92 00:03:36,060 --> 00:03:38,040 of the family would also be at risk 93 00:03:38,040 --> 00:03:40,250 for neurofibromatosis type 1. 94 00:03:41,460 --> 00:03:43,230 So really everybody is. 95 00:03:43,230 --> 00:03:46,080 Who in the family is protected from genetic discrimination 96 00:03:46,080 --> 00:03:48,990 based on family history of NF1? 97 00:03:48,990 --> 00:03:52,170 Well, so here, let's go back to thinking about 98 00:03:52,170 --> 00:03:54,240 who is protected by GINA. 99 00:03:54,240 --> 00:03:55,110 That would be those 100 00:03:55,110 --> 00:03:58,470 who do not have a manifest condition already. 101 00:03:58,470 --> 00:04:00,120 So not something that's already been diagnosed. 102 00:04:00,120 --> 00:04:03,060 Sam already has neurofibromatosis, 103 00:04:03,060 --> 00:04:05,670 has been diagnosed with the neurofibromatosis, 104 00:04:05,670 --> 00:04:08,850 so he would not be covered under, 105 00:04:08,850 --> 00:04:10,950 specifically under GINA for protection 106 00:04:10,950 --> 00:04:15,090 from health insurers using that information. 107 00:04:15,090 --> 00:04:17,193 However, everyone else in the family 108 00:04:17,193 --> 00:04:21,510 who has not been diagnosed with neurofibromatosis type 1 109 00:04:21,510 --> 00:04:23,370 would be protected by GINA. 110 00:04:23,370 --> 00:04:26,430 So that would be everybody there, but not Sam. 111 00:04:26,430 --> 00:04:29,490 For Sam, does GINA prohibit an insurer 112 00:04:29,490 --> 00:04:31,920 from using his NF1 diagnosis for underwriting purposes? 113 00:04:31,920 --> 00:04:34,890 It does not because he's already symptomatic 114 00:04:34,890 --> 00:04:36,990 and had been diagnosed clinically with it. 115 00:04:38,130 --> 00:04:41,130 Now let's consider a family history for Type 2 diabetes. 116 00:04:41,130 --> 00:04:44,310 So here we're looking at a condition 117 00:04:44,310 --> 00:04:45,810 that Sam does not actually have, 118 00:04:45,810 --> 00:04:47,610 but say his mother had Type 2 diabetes, 119 00:04:47,610 --> 00:04:50,190 her mother had it, and her sister had it as well. 120 00:04:50,190 --> 00:04:53,190 So you've collected this information and family history. 121 00:04:53,190 --> 00:04:54,900 So let's consider the question. 122 00:04:54,900 --> 00:04:58,380 Can Sam, can an insurer use the family history 123 00:04:58,380 --> 00:05:01,500 for Type 2 diabetes for underwriting purposes for Sam? 124 00:05:01,500 --> 00:05:05,070 Well, the answer here is no, they cannot. 125 00:05:05,070 --> 00:05:05,903 Why is that? 126 00:05:05,903 --> 00:05:08,010 Because Sam does not have Type 2 diabetes right now 127 00:05:08,010 --> 00:05:11,070 so he does not have it manifest as a condition. 128 00:05:11,070 --> 00:05:14,010 And even if a condition is known to be genetic, 129 00:05:14,010 --> 00:05:16,227 if a patient does not have symptoms of it, 130 00:05:16,227 --> 00:05:18,330 has not been clinically diagnosed with it, 131 00:05:18,330 --> 00:05:21,060 they are protected by GINA for any kind 132 00:05:21,060 --> 00:05:23,810 of genetic information that might be gathered for them. 133 00:05:24,900 --> 00:05:27,930 Under GINA, is the insurer allowed to request Sam's medical 134 00:05:27,930 --> 00:05:29,910 and/or family history information for the purpose 135 00:05:29,910 --> 00:05:32,700 of determining eligibility for medical services? 136 00:05:32,700 --> 00:05:35,460 The answer here is yes, they can. 137 00:05:35,460 --> 00:05:37,953 That is no different from any other disease. 138 00:05:39,330 --> 00:05:40,170 All right, under Gina, 139 00:05:40,170 --> 00:05:41,910 the definition of genetic information 140 00:05:41,910 --> 00:05:44,670 includes the manifestation of a disease in a family member, 141 00:05:44,670 --> 00:05:46,710 which includes first, second, third, 142 00:05:46,710 --> 00:05:48,240 or fourth degree relatives. 143 00:05:48,240 --> 00:05:51,270 This family history information is protected under GINA. 144 00:05:51,270 --> 00:05:53,550 The insurer may not use family history information 145 00:05:53,550 --> 00:05:55,140 for underwriting purposes. 146 00:05:55,140 --> 00:05:58,200 GINA does not prohibit an insurer from reviewing medical 147 00:05:58,200 --> 00:06:00,360 and family history to determine eligibility 148 00:06:00,360 --> 00:06:02,460 for further medical surveillance testing 149 00:06:02,460 --> 00:06:04,080 or preventive care or treatment. 150 00:06:04,080 --> 00:06:07,440 GINA does not, or rather GINA does prohibit the insurer 151 00:06:07,440 --> 00:06:08,640 from using that information 152 00:06:08,640 --> 00:06:10,380 to make decisions about underwriting. 153 00:06:10,380 --> 00:06:13,590 So the insurer may review that information 154 00:06:13,590 --> 00:06:17,340 but they may not use it for underwriting decisions. 155 00:06:17,340 --> 00:06:19,260 This law should not keep you 156 00:06:19,260 --> 00:06:21,660 from taking a comprehensive family history 157 00:06:21,660 --> 00:06:23,823 because there is legal protection. 158 00:06:25,440 --> 00:06:28,213 In our second case here, GINA and genetic testing. 159 00:06:28,213 --> 00:06:31,530 A 25-year-old male has direct-to-consumer genetic testing. 160 00:06:31,530 --> 00:06:33,900 The results show in apoE4 genotype, 161 00:06:33,900 --> 00:06:36,030 increasing risk of cardiovascular disease 162 00:06:36,030 --> 00:06:37,590 and Alzheimer's disease. 163 00:06:37,590 --> 00:06:40,740 Can an insurer use this information about his future risk 164 00:06:40,740 --> 00:06:43,847 for cardiovascular disease for underwriting purposes? 165 00:06:43,847 --> 00:06:46,740 The answer here is no, 166 00:06:46,740 --> 00:06:49,980 because he does not as of right now have any symptoms 167 00:06:49,980 --> 00:06:51,390 of cardiovascular disease, 168 00:06:51,390 --> 00:06:53,490 nor does he have any symptoms of Alzheimer's disease. 169 00:06:53,490 --> 00:06:56,670 So it cannot be used for underwriting purposes at all. 170 00:06:56,670 --> 00:06:59,340 Can his insurer request genetic testing result 171 00:06:59,340 --> 00:07:00,720 to determine medical necessity 172 00:07:00,720 --> 00:07:02,910 for lipid profile screening and surveillance? 173 00:07:02,910 --> 00:07:06,540 If this was what his physician decided was an appropriate 174 00:07:06,540 --> 00:07:08,820 move and this was something that the patient also agreed 175 00:07:08,820 --> 00:07:11,220 to as a result of the direct-to-consumer 176 00:07:11,220 --> 00:07:12,630 genetic test result, 177 00:07:12,630 --> 00:07:14,730 can his insurer request the testing result 178 00:07:14,730 --> 00:07:17,670 to determine the medical necessity for this increased 179 00:07:17,670 --> 00:07:18,837 or for these tests? 180 00:07:18,837 --> 00:07:20,547 And the answer is yes, they can. 181 00:07:20,547 --> 00:07:24,288 They can, they just cannot use the information from that, 182 00:07:24,288 --> 00:07:27,900 from that genetic test to affect his, 183 00:07:27,900 --> 00:07:31,530 the underwriting of his insurance, 184 00:07:31,530 --> 00:07:34,170 but they can request the information to know 185 00:07:34,170 --> 00:07:35,640 that there is a medical necessity 186 00:07:35,640 --> 00:07:37,353 for these other expensive tests. 187 00:07:40,380 --> 00:07:42,000 The patient's genetic profile obtained 188 00:07:42,000 --> 00:07:44,430 through the direct-to-consumer tests is protected 189 00:07:44,430 --> 00:07:47,430 and cannot be used to deny him access to medical insurance. 190 00:07:47,430 --> 00:07:50,160 The patient-related discussions and medical history obtained 191 00:07:50,160 --> 00:07:52,890 from his medical provider are also protected. 192 00:07:52,890 --> 00:07:55,620 GINA does not require health insurers to cover the cost 193 00:07:55,620 --> 00:07:58,140 of genetic testing or follow-up care. 194 00:07:58,140 --> 00:07:59,100 So keep that in mind. 195 00:07:59,100 --> 00:08:02,580 It it's not enforcement of requiring insurers 196 00:08:02,580 --> 00:08:04,110 to pay for genetic tests. 197 00:08:04,110 --> 00:08:06,840 The insurer can request the test results 198 00:08:06,840 --> 00:08:09,480 to determine medical necessity for lipid profile screening 199 00:08:09,480 --> 00:08:12,630 and surveillance and Alzheimer's surveillance later in life. 200 00:08:12,630 --> 00:08:15,120 The law does not compel you to order genetic tests 201 00:08:15,120 --> 00:08:16,605 that you would otherwise, 202 00:08:16,605 --> 00:08:20,253 rather that you would not have otherwise ordered. 203 00:08:22,140 --> 00:08:23,670 All right, case number three. 204 00:08:23,670 --> 00:08:26,250 GINA, manifest disease, and predisposition. 205 00:08:26,250 --> 00:08:27,083 Predisposition. 206 00:08:27,083 --> 00:08:28,440 So Rachel, a 39-year-old woman, 207 00:08:28,440 --> 00:08:30,540 presents with a mass in the right breast. 208 00:08:30,540 --> 00:08:33,480 Biopsy is positive for invasive breast cancer. 209 00:08:33,480 --> 00:08:35,880 So here's Rachel on the right, 210 00:08:35,880 --> 00:08:37,380 referred to genetic counseling 211 00:08:37,380 --> 00:08:38,820 and testing because of young age 212 00:08:38,820 --> 00:08:41,010 and Ashkenazi Jewish background. 213 00:08:41,010 --> 00:08:42,516 Positive for BRCA1 mutation 214 00:08:42,516 --> 00:08:45,270 and she opts for bilateral mastectomy. 215 00:08:45,270 --> 00:08:46,860 Is Rachel protected under GINA 216 00:08:46,860 --> 00:08:50,310 because she has a genetic cause for her breast cancer? 217 00:08:50,310 --> 00:08:53,220 Well, the answer is no because she has breast cancer. 218 00:08:53,220 --> 00:08:54,450 So she has manifest disease. 219 00:08:54,450 --> 00:08:57,120 Whether it is genetic basis or not, it doesn't matter. 220 00:08:57,120 --> 00:09:02,040 It is not covered by GINA because it is a manifest disease. 221 00:09:02,040 --> 00:09:04,410 BRCA1 mutations are associated with increased risk 222 00:09:04,410 --> 00:09:06,000 for breast and ovarian cancer. 223 00:09:06,000 --> 00:09:07,950 Does GINA prohibit the insurance company 224 00:09:07,950 --> 00:09:10,440 from denying Rachel coverage for surveillance 225 00:09:10,440 --> 00:09:13,620 and risk reduction procedures for ovarian cancer? 226 00:09:13,620 --> 00:09:16,530 The answer here is yes, it does protect. 227 00:09:16,530 --> 00:09:17,850 It does protect that. 228 00:09:17,850 --> 00:09:20,400 So GINA would prohibit the insurance company 229 00:09:20,400 --> 00:09:24,570 from denying her coverage for ovarian cancer surveillance 230 00:09:24,570 --> 00:09:26,430 because she doesn't have ovarian cancer, 231 00:09:26,430 --> 00:09:27,480 she has breast cancer. 232 00:09:27,480 --> 00:09:31,923 So they can only use the disease that is currently manifest. 233 00:09:32,759 --> 00:09:34,530 All right, 234 00:09:34,530 --> 00:09:39,530 so if we now look at her extended family tree here, 235 00:09:40,470 --> 00:09:43,830 she has a sister, Stephanie, who's 32 years old. 236 00:09:43,830 --> 00:09:46,174 Stephanie may be at risk for BRCA1 mutation 237 00:09:46,174 --> 00:09:48,360 and early cancer as well. 238 00:09:48,360 --> 00:09:49,830 Stephanie desires testing. 239 00:09:49,830 --> 00:09:53,340 If Stephanie shares Rachel's BRCA1 mutation status 240 00:09:53,340 --> 00:09:54,173 with her doctor, 241 00:09:54,173 --> 00:09:57,000 can the insurance company use that information? 242 00:09:57,000 --> 00:09:59,640 Well, the answer is no. 243 00:09:59,640 --> 00:10:02,430 They cannot use that information to deny her coverage 244 00:10:02,430 --> 00:10:04,290 or to affect her underwriting. 245 00:10:04,290 --> 00:10:07,290 If Stephanie gets genetic testing and is a BRCA1 carrier, 246 00:10:07,290 --> 00:10:08,820 will her insurance company be allowed 247 00:10:08,820 --> 00:10:11,100 to deny her treatment if she develops breast cancer? 248 00:10:11,100 --> 00:10:12,390 Of course not. No. 249 00:10:12,390 --> 00:10:13,650 That is not a manifest disease. 250 00:10:13,650 --> 00:10:15,330 She does not currently have breast cancer 251 00:10:15,330 --> 00:10:18,180 so that information cannot be used, 252 00:10:18,180 --> 00:10:19,650 and that is really the very heart of GINA, 253 00:10:19,650 --> 00:10:24,510 is to protect patients from the fear that if they get, 254 00:10:24,510 --> 00:10:26,730 if they are trying to be proactive in their health 255 00:10:26,730 --> 00:10:28,380 and determine their risks, 256 00:10:28,380 --> 00:10:30,030 that they cannot be penalized 257 00:10:30,030 --> 00:10:32,013 from an insurance company for that. 258 00:10:33,510 --> 00:10:34,830 GINA doesn't prohibit insurers 259 00:10:34,830 --> 00:10:36,780 from using information about existing condition, 260 00:10:36,780 --> 00:10:39,030 even if that condition has a genetic basis. 261 00:10:39,030 --> 00:10:40,740 The increased risk of other cancers 262 00:10:40,740 --> 00:10:42,540 based on patient's BRCA1 mutation 263 00:10:42,540 --> 00:10:45,570 is genetic information and is protected. 264 00:10:45,570 --> 00:10:47,460 GINA protects Stephanie against misuse 265 00:10:47,460 --> 00:10:48,990 of information about a family history 266 00:10:48,990 --> 00:10:50,640 of hereditary breast cancer. 267 00:10:50,640 --> 00:10:53,460 Stephanie's insurer can request family history information 268 00:10:53,460 --> 00:10:55,890 to determine the necessity of the breast cancer 269 00:10:55,890 --> 00:10:57,480 of the BRCA1 testing, 270 00:10:57,480 --> 00:11:00,687 but cannot use that information to, 271 00:11:00,687 --> 00:11:03,210 cannot keep her from obtaining 272 00:11:03,210 --> 00:11:05,280 and continuing her medical insurance regardless 273 00:11:05,280 --> 00:11:06,720 of her BRCA status. 274 00:11:06,720 --> 00:11:09,330 The law should ease concerns about sharing information 275 00:11:09,330 --> 00:11:12,150 within families and with providers. 276 00:11:12,150 --> 00:11:13,500 That's the goal of the law. 277 00:11:14,670 --> 00:11:16,230 GINA and prenatal issues. 278 00:11:16,230 --> 00:11:18,600 So a 33-year-old white female 279 00:11:18,600 --> 00:11:23,130 accepts cystic fibrosis screening at 13 weeks of gestation. 280 00:11:23,130 --> 00:11:25,710 The screening shows she carries the delta five, 281 00:11:25,710 --> 00:11:28,077 the delta F508 mutation 282 00:11:28,077 --> 00:11:29,730 and the patient's partner is tested. 283 00:11:29,730 --> 00:11:32,940 He carries different cystic fibrosis mutation. 284 00:11:32,940 --> 00:11:35,220 The couple offered genetic counseling 285 00:11:35,220 --> 00:11:37,800 and amniocentesis for prenatal diagnosis. 286 00:11:37,800 --> 00:11:40,020 Would a prenatal diagnosis of cystic fibrosis 287 00:11:40,020 --> 00:11:41,670 constitute a preexisting condition 288 00:11:41,670 --> 00:11:44,430 for this child's health insurance after birth? 289 00:11:44,430 --> 00:11:46,260 The answer here is no 290 00:11:46,260 --> 00:11:48,670 because the child does not have man, 291 00:11:48,670 --> 00:11:52,800 the fetus before the child was born 292 00:11:52,800 --> 00:11:56,040 and also the newborn does not have manifestation 293 00:11:56,040 --> 00:11:58,560 of cystic fibrosis at that stage 294 00:11:58,560 --> 00:12:00,120 and so it would cover them, 295 00:12:00,120 --> 00:12:01,817 cover the child until the child does 296 00:12:01,817 --> 00:12:06,333 develop clinical manifestation of cystic fibrosis. 297 00:12:07,620 --> 00:12:09,600 Under GINA, health insurance companies cannot 298 00:12:09,600 --> 00:12:12,300 consider genetic information a pre-existing condition. 299 00:12:12,300 --> 00:12:14,430 All the following genetic information is protected. 300 00:12:14,430 --> 00:12:18,450 Family history, prenatal DNA results of the fetus, 301 00:12:18,450 --> 00:12:21,420 biochemical newborn screening results of the infant, 302 00:12:21,420 --> 00:12:23,850 and cystic fibrosis DNA results of the infant. 303 00:12:23,850 --> 00:12:25,800 If the child is born with cystic fibrosis, 304 00:12:25,800 --> 00:12:28,290 coverage decisions related to treatment may be subject 305 00:12:28,290 --> 00:12:29,970 to decisions by the insurance carrier 306 00:12:29,970 --> 00:12:32,370 once the diseases manifest. 307 00:12:32,370 --> 00:12:33,203 All right, 308 00:12:33,203 --> 00:12:35,340 so you may be wondering about the Healthcare Reform Act 309 00:12:35,340 --> 00:12:36,390 and GINA. 310 00:12:36,390 --> 00:12:38,460 So the new, the new health legislation 311 00:12:38,460 --> 00:12:40,320 which was new when this, 312 00:12:40,320 --> 00:12:42,030 when these slides were made 313 00:12:42,030 --> 00:12:44,977 but has really just gone into effect more recently, 314 00:12:44,977 --> 00:12:48,180 that is some aspects do not take effect for several years, 315 00:12:48,180 --> 00:12:49,320 well, we're already here now. 316 00:12:49,320 --> 00:12:50,670 So that's starting to take effect 317 00:12:50,670 --> 00:12:52,440 as I'm sure you're all very aware. 318 00:12:52,440 --> 00:12:54,450 Provides health insurance coverage to the uninsured 319 00:12:54,450 --> 00:12:56,790 and it seeks to improve coverage for millions of Americans 320 00:12:56,790 --> 00:12:58,680 and will provide access to care 321 00:12:58,680 --> 00:13:00,510 to some individuals not helped by GINA, 322 00:13:00,510 --> 00:13:02,670 such as those with manifest genetic conditions. 323 00:13:02,670 --> 00:13:05,160 So they should be made aware of that 324 00:13:05,160 --> 00:13:09,360 when they're considering genetic testing 325 00:13:09,360 --> 00:13:11,730 and just the implications of what they are 326 00:13:11,730 --> 00:13:15,240 or are not protected from through GINA. 327 00:13:15,240 --> 00:13:16,980 So general summary of what GINA does. 328 00:13:16,980 --> 00:13:18,930 It affects health insurers and employers. 329 00:13:18,930 --> 00:13:21,630 The law's protections might ease concerns some patients have 330 00:13:21,630 --> 00:13:23,220 when considering genetic testing. 331 00:13:23,220 --> 00:13:25,860 Under GINA group and health insure, 332 00:13:25,860 --> 00:13:28,770 health insurers cannot use a person's genetic information 333 00:13:28,770 --> 00:13:31,560 to set eligibility requirements or establish premium 334 00:13:31,560 --> 00:13:32,970 or contribution amounts, 335 00:13:32,970 --> 00:13:35,850 request or require that a person undergo a genetic test. 336 00:13:35,850 --> 00:13:36,750 And also under GINA, 337 00:13:36,750 --> 00:13:39,270 employers cannot use a person's genetic information in 338 00:13:39,270 --> 00:13:40,800 decisions about hiring, firing, 339 00:13:40,800 --> 00:13:42,360 job assignments or promotions, 340 00:13:42,360 --> 00:13:45,090 request or require or purchase genetic information 341 00:13:45,090 --> 00:13:47,670 about an employee or family member. 342 00:13:47,670 --> 00:13:49,260 So just a general summary. 343 00:13:49,260 --> 00:13:51,180 Types of protected genetic information. 344 00:13:51,180 --> 00:13:53,775 Family medical history, carrier testing, 345 00:13:53,775 --> 00:13:55,770 prenatal genetic testing, 346 00:13:55,770 --> 00:13:57,390 susceptibility testing, 347 00:13:57,390 --> 00:14:00,210 analysis of tumors or other assessments of genes, 348 00:14:00,210 --> 00:14:02,610 mutations, or chromosomal changes. 349 00:14:02,610 --> 00:14:05,940 Again, unless they come along with a manifest condition, 350 00:14:05,940 --> 00:14:07,800 in which case it's not covered by GINA simply 351 00:14:07,800 --> 00:14:09,513 because it is already manifest. 352 00:14:10,770 --> 00:14:11,603 What it does not do. 353 00:14:11,603 --> 00:14:13,410 Protect information about disease simply 354 00:14:13,410 --> 00:14:15,120 because it's genetic when the disease 355 00:14:15,120 --> 00:14:17,190 is already diagnosed and manifest. 356 00:14:17,190 --> 00:14:20,550 Apply to life, disability, or long-term care insurers 357 00:14:20,550 --> 00:14:22,530 as of the date listed on this presentation, 358 00:14:22,530 --> 00:14:24,060 which is also still the case. 359 00:14:24,060 --> 00:14:26,280 Protect information about current health status. 360 00:14:26,280 --> 00:14:28,440 Provide employment to protections in organizations 361 00:14:28,440 --> 00:14:29,940 with fewer than 15 employees. 362 00:14:29,940 --> 00:14:32,100 Talked about this in the previous lecture. 363 00:14:32,100 --> 00:14:34,020 Protect certain groups including military 364 00:14:34,020 --> 00:14:35,010 and federal employees, 365 00:14:35,010 --> 00:14:39,746 and those are actually protected by other, 366 00:14:39,746 --> 00:14:42,975 other anti-discrimination laws as well. 367 00:14:42,975 --> 00:14:45,060 So exemptions to GINA. 368 00:14:45,060 --> 00:14:46,470 Information about sex, age, 369 00:14:46,470 --> 00:14:48,180 or common blood tests such as CBC 370 00:14:48,180 --> 00:14:49,800 or cholesterol testing is not covered, 371 00:14:49,800 --> 00:14:51,675 not considered a genetic test. 372 00:14:51,675 --> 00:14:54,363 Life, disability, long-term care insurers. 373 00:14:54,363 --> 00:14:55,530 Again, we've talked about this. 374 00:14:55,530 --> 00:14:57,420 Employers with fewer than 15 employees, 375 00:14:57,420 --> 00:14:59,790 members of the US military, they're covered separately. 376 00:14:59,790 --> 00:15:02,160 Veterans obtaining healthcare through the VA, 377 00:15:02,160 --> 00:15:03,960 individuals using Indian Health Service, 378 00:15:03,960 --> 00:15:04,980 or federal employees 379 00:15:04,980 --> 00:15:07,680 enrolled in Federal Employees Health Benefits program. 380 00:15:08,610 --> 00:15:09,573 They all have, 381 00:15:09,573 --> 00:15:13,170 some of those have their own separate coverage 382 00:15:13,170 --> 00:15:17,400 that would supersede GINA and those are, 383 00:15:17,400 --> 00:15:20,014 but those are important considerations to keep in mind. 384 00:15:20,014 --> 00:15:20,847 So here's a list of some resources 385 00:15:20,847 --> 00:15:22,380 that you may find helpful. 386 00:15:22,380 --> 00:15:25,590 The ginahelp.org is a very helpful website to go to 387 00:15:25,590 --> 00:15:26,970 and also potentially to send patients 388 00:15:26,970 --> 00:15:30,960 or family members to who may have more questions about GINA. 389 00:15:30,960 --> 00:15:32,190 All right, well with that, 390 00:15:32,190 --> 00:15:35,010 I will say goodbye and I look forward to talking 391 00:15:35,010 --> 00:15:36,181 with you more on the discussion board. 392 00:15:36,181 --> 00:15:37,263 Take care.